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Good health care for all

Description: Good health care for all What can I expect from the NHS? Alison Giraud-Saunders February 2012 1 Who
Url: /Media/UHS-website-2019/Docs/For-patients/Good-health-care-for-all.pdf

Recipe book - For toddlers who need to make the most of every mouthful

Description: RECIPE BOOK For toddlers who need to get the most out of every mouthful Contents 04 Acknowledgements & introduction 06 Questions, t
Url: /Media/UHS-website-2019/Docs/Services/Child-health/DietaryAdvice/Recipe-book-For-toddlers-who-need-to-make-the-most-of-every-mouthful.pdf

The Flange FITS Guide for optimal comfort, efficiency and milk yield

Description: THE FLANGE FITS™ GUIDE for optimal comfort, efficiency and milk yield a results-based method for pumping Feel Intensity Tempo Supply SIDE VIEW PARENT’S VIEW ©Copyright Babies in Common 2023 Jeanette Mesite Frem, IBCLC. Reproduction permitted with attribution. April 2023. Best Fit • only nipple pulled into tunnel • sides of nipple touch walls of tunnel • nipple moves a little bit back and forth in tunnel • milk sprays during pumping • best to pump 15-20 minutes (both sides at same time) • feels like nothing or a gentle tug Too Large Much Too Large • might hurt • might get less milk or more drips than sprays • nipple might move side to side in tunnel • pumping might take a long time • more chance for nipple swelling and damage • areola goes into tunnel and can swell • outdated recommendations will indicate this as best fit; newer clinical evidence finds this too large babiesincommon.com Feel of the flange (size, shape, material) Which flange size, shape or material is the most comfortable (but also gets out the most milk)? Often, a flange that is closest to the actual size of the nipple feels best (and gets the most milk out). Start by measuring how wide the tip of each nipple is (left can be different than right). 1. Gently touch/tug the nipple to help it stick out a bit. 2. Use a tool with centimeters (cm) or millimeters (mm). Start with 0 next to one edge of the nipple tip. The tool does not need to touch the nipple. 3. Turn on the pump on a low vacuum/intensity level and try pumping with 2 or 3 hard plastic flange sizes: one a little smaller than the nipple, one about the same size, and one a little bigger than the nipple. • Best fit or optimal fit: The sides of the nipple touch the sides of the flange tunnel and the nipple gently glides a little bit back and forth. It should also be comfortable and milk should come out easily. • Too small: The nipple will not move easily in the tunnel and less/no milk comes out. • Too large: It may hurt, make the nipple get bigger than it usually is (swollen) and less milk comes out. A thin layer of coconut oil or nipple balm on the bend of the flange can increase comfort. Pumping should feel good and get plenty of milk out! Intensity of the pump (vacuum pressure/pull) How strongly does the pump pull on the nipple? The intensity of the pull of the nipple into the flange tunnel depends on the pump. Not all pumps are the same. Not all pumping parents need a strong pull when pumping. Once milk starts spraying and there is complete comfort, stay on that vacuum level and play with the pump cycle speed. Increase the intensity of the pull during the pumping session if it is comfortable and you see more milk sprays. Pumping should be comfortable from start to finish – it should not be something to "tolerate". Nipples should feel good when the pumping session is done. The size of the nipple (width) should be about the same as before pumping (but the nipple may be longer after pumping). Tempo of the pump (cycle speed, rhythm, vibration) What is the best tempo of the pump? The one that helps the most milk come out. The tempo is not only the speed, or cycle, but also the rhythm. Some pumps have simple tempos and others have options. Think of tempo like music for dance. Some tempos are faster, slower, or a combination of fast and slow. See what works best for your body with the pump you have. Some pumps have more of a pull-release rhythm and others have more of a vibration. Helpful Tips: • Start on the fastest tempo and after milk is coming out for 20-30 seconds, change to a slower tempo – more sprays should come out. • If sprays stop at some point during the pumping session, change the tempo back to faster for 1-2 minutes and then back to slower again. There are people who stay on a faster tempo the entire pumping session—play with the tempo to discover what works best to get the most milk out but with comfort. Some parents may need to find a different pump that works better for their body. A pumping session ideally would last 15-20 minutes. Supply of milk (drips, dribbles; strong sprays are ideal) How much milk should someone get when pumping? The answer depends on many factors but the goal is to see sprays of milk during pumping. Drips and dribbles are fine for part of a pumping session but, ideally, sprays would be seen/heard for most of the pumping session. Helpful Tips: • Many people find they get the most milk when they have the best flange fit. They may also get the same amount or more milk in a shorter amount of time when pumping than with flanges that are too large. • Hands-on pumping during pumping and hand expression of milk after pumping can help get more milk out. • The left breast may make more or less milk than the right • It's normal to get more milk in the morning hours. If you want to make more milk overall, it's best to seek out help from a lactation professional who specializes in pumping and milk supply. What about silicone flanges and inserts? For parents who wish to get more milk during pump sessions but who want to try silicone inserts or silicone flanges, it is best to try hard plastic flanges first to find the ideal size for each nipple. Then try silicone flanges and/or inserts and see how the comfort and amount of milk pumped compares to using the best fitting hard flange. Many people find that they get more milk with a hard flange that is the optimal size, and they are completely comfortable. Need help? Find a lactation professional who has experience observing pumping sessions with varied flange options. They can do an in-person or video meeting to help find the optimal flange size for you. If you have questions or want help finding someone near you who can help with flange fitting, email jeanette@babiesincommon.com. The Flange FITS™ Guide by Jeanette Mesite Frem MHS, IBCLC, RLC, CCE. Reproduction and distribution permitted with attribution. No editing or cropping permitted. Editing Assistance: Nikki Lee, RN, BSN, MS, IBCLC, RLC, CCE & the Washington State Dept of Health WIC Program. Stephanie Audette Connor, graphic designer. areola nipple tip Measure nipple tip before pumping to estimate which flange sizes to try. 1cm = 10mm. Flange sizes are in mm. page 2/2 | v.2, 4/2023
Url: /Media/UHS-website-2019/Docs/Services/Maternity/The-Flange-FITS-Guide-for-optimal-comfort-efficiency-and-milk-yield.pdf

Your child's earwax removal appointment - patient information

Description: This factsheet provides information about earwax removal and explains what to expect at your child's earwax removal appointment.
Url: /Media/UHS-website-2019/Patientinformation/Audiology/Your-childs-earwax-removal-appointment-3621-PIL.pdf

The Hospital Communication book

Description: The Hospital Communication Book Helping to make sure people who have difficulties understanding and /or communicati
Url: /Media/UHS-website-2019/Docs/For-patients/The-Hospital-Communication-book.pdf

Managing your child's earwax at home - patient information

Description: This factsheet contains information about earwax and ways that you can manage your child's earwax safely at home.
Url: /Media/UHS-website-2019/Patientinformation/Audiology/Managing-your-childs-earwax-at-home-3622-PIL.pdf

PDF document

Description: Originally uploaded to http://cdn.flamehaus.com/Valve_Handbook_LowRes.pdf Handbook courtesy of Valv
Url: /Media/UHS-website-2019/Docs/Zengenti-Mock/PDF-document.pdf

Diverticular disease and diverticulitis - patient information

Description: This factsheet explains what diverticular disease and diverticulitis are, what the symptoms are and how they can be treated.
Url: /Media/UHS-website-2019/Patientinformation/Endoscopy/Diverticular-disease-and-diverticulitis-989-PIL.pdf

Annual report 20-21

Description: 2020/21 Incorporating the quality report University Hospital Southampton NHS Foundation Trust Annual Report and Accounts 2020/21 Presented to Parliament pursuant to Schedule 7, paragraph 25(4)(a) of the National Health Service Act 2006 © 2021 University Hospital Southampton NHS Foundation Trust Table of contents Welcome from our chair and chief executive 6 Overview and performance 8 Performance report 9 Overview 10 Accountability report 29 Directors’ report 30 Remuneration report 53 Staff report 65 NHS Foundation Trust Code of Governance 81 NHS Oversight Framework 81 Annual governance statement 84 Quality report 95 Statement on quality from the chief executive 96 Priorities for improvement and statements of assurance from the board 99 Other information 153 Annual accounts 180 Statement from the chief financial officer 181 Auditor’s report 182 Foreword to the accounts 188 Statement of Comprehensive Income 189 Statement of Financial Position 190 Statement of Changes in Taxpayers’ Equity 191 Statement of Cash Flows 192 Notes to the accounts 193 5 Welcome from our chair and chief executive 2020/21 was undoubtedly the most challenging year in the history of the NHS, and we have felt the impact of the COVID-19 pandemic here at University Hospital Southampton NHS Foundation Trust (UHS) in full. Responding to this has meant there isn’t a single part of our organisation that hasn’t changed in some way over the last year and we have all had to adapt to a rapidly changing environment. Our staff have been unwavering in their dedication, hard work and commitment to keeping our hospitals running, our patients cared for, and their colleagues supported. Every single member of the UHS family has played their part. The loss of life from COVID-19 has been devastating, and at UHS we stand shoulder-to-shoulder with everyone affected by this tragedy, including the families of staff members whom we lost. We must recognise the incredible work of Southampton Hospital Charity, which has funded boost boxes, wellness rooms, a helpline and so much more to support staff at a time when their wellbeing is more important than ever. As the nationwide vaccination programme continues to offer hope of life more like pre-pandemic times, we are proud to have been at the forefront of these efforts - from being part of early research for the Oxford-AstraZeneca vaccine, to the opening of one of the largest vaccination hubs in the region on our site in December 2020. We will continue to play a key role in vaccination development by leading the world’s first clinical trial into the effectiveness of COVID-19 booster vaccines, as well as taking part in a study involving pregnant people. Our response to COVID-19 has prompted innovation and new ways of working across the Trust, to the benefit of patient experience. At the start of the pandemic we faced real challenges of capacity and increases in waiting times, which led to us working with Spire Southampton so cancer treatment and surgery could continue for patients at highest risk. We also increased the number of outpatient attendances which took place by telephone or video call, and our patient support hub was set up to provide a single point of support for patients who had been advised to shield. We are immensely proud of the record of the Trust during the pandemic, exemplified by the number of patients we were able to take into our care from well outside the local area. The Trust is in a strong financial position as a result of careful spending and efficiencies, which has allowed us to invest significantly in upgrading our estate. These improvements have seen the opening of the general intensive care unit, and the new cancer ward, which was built in just six months. These formed part of overall capital expenditure of £80 million during the year. The last year has seen us say goodbye to two members of our executive leadership team. Paula Head left the chief executive officer role in November to join the national response to COVID-19, before becoming a senior fellow at The King’s Fund. Derek Sandeman moved on from being our chief medical officer to take the same position at the Hampshire and Isle of Wight Integrated Care System. We are grateful to both for their efforts on the Trust leadership team during the most challenging of years. One of our non-executive directors, Jenni Douglas-Todd, also left the Trust to take on the important role of director of equality and inclusion with NHS England and NHS Improvement. 6 Looking ahead to the future, UHS will play a key role in the Hampshire and Isle of Wight Integrated Care System. Our commitment is to deliver services with partners through clinical networks, collaboration and integration across geographical and organisational boundaries for seamless patient care. We as a Trust board are looking forward to implementing our own five year strategy, which sets out ambitions for what we want the hospital to be in 2025, for both patients and staff. Our focus will always be on enabling world class people to deliver world class care. Peter Hollins David French Chair Chief Executive Officer 7 OVERVIEW AND PERFORMANCE Performance report Introduction from our chief executive Over the last year, the way in which the Trust has worked and performance it has achieved, has been transformed by the COVID-19 pandemic. • UHS saw a number of large surges in demand for inpatient care, and for intensive respiratory support in particular, due to COVID-19 infection rates. Our capacity to deliver intensive care had to be increased, and many of our staff moved from other services such as our elective theatres in order to meet this need for care. • We have introduced and continue to maintain a number of changes to reduce the risk of COVID-19 being transmitted, or adversely affecting patient outcomes, within the Trust. Changes have included the wearing of additional personal protective equipment by our staff (especially when caring for patients who might have COVID-19 or undertaking higher risk procedures), reducing the number of patients coming to our outpatient departments and increasing the number of telephone and video consultations, separating elective and emergency patients within our departments and regular testing of our staff and all patients on or prior to their admission to hospital for treatment. • Public concerns about safety, government restrictions and the efforts of community services actually contributed to reductions in the total number of patients who sought hospital care this year. • Treatment plans have been modified by a number of services, in partnership with patients, to reduce the risk posed by COVID-19 to those patients. This was often appropriate in those circumstances in which the normal treatment would significantly reduce the patient’s own resistance to infections. Our performance has, in many cases, been strongly influenced by these profound changes. We have responded well to the need to provide the most urgent care, and the adverse impacts on elective care have been slightly less than the average across the NHS. However, we remain very concerned by the significant increase in the numbers of patients waiting longer than they should for elective care. It will take concerted and sustained action within both the Trust and the wider NHS in order to return elective performance to levels achieved before the pandemic whilst also continuing to meet urgent care needs as the restrictions that have been implemented within our society are progressively relaxed. 9 Overview About the Trust Our services University Hospital Southampton NHS Foundation Trust is one of the largest acute teaching trusts in England with a turnover of more than £1 billion in 2020/21. It is based on the coast in south east England and provides services to over 1.9 million people living in Southampton and south Hampshire and specialist services, including neurosciences, respiratory medicine, cancer care, cardiovascular, obstetrics and specialist children’s services, to more than 3.7 million people in central southern England and the Channel Islands. The Trust is also a designated major trauma centre, one of only two places in the south of England to offer adults and children full major trauma care provision. As a leading centre for teaching and research, the Trust has close working relationships with the University of Southampton, the Medical Research Council, National Institute for Health Research (NIHR), Wellcome Trust and Cancer Research UK. UHS is consistently one of the UK’s highest recruiting trusts of patients to clinical trials and in the top ten nationally for research study volume as ranked by the NIHR Clinical Research Network. 12,000 Every year over staff at UHS: treat around 160,000 inpatients and day patients, including about 75,000 emergency admissions see over 650,000 people at outpatient appointments deal with around 150,000 cases in our emergency department deliver more than 100 outpatient clinics across the south of England, keeping services local for patients The Trust provides most of its services from the following locations: • Southampton General Hospital – the Trust’s largest location, where a great number of specialist services are based alongside emergency and critical care and which includes Southampton Children’s Hospital. • Princess Anne Hospital – located across the road from Southampton General Hospital and providing maternity care and specialist care for women with medical problems during pregnancy and babies who need extra care around birth across the region. • Royal South Hants Hospital – although the Trust does not operate this site near the centre of Southampton it provides a smaller number of services from this location. • New Forest Birth Centre – located at Ashurst on the edge of the New Forest and run by experienced midwives and support staff it offers a safe, ‘home away from home’ environment for women having a healthy pregnancy and expecting a straightforward birth. The services provided by the Trust are commissioned and paid for by local clinical commissioning groups (CCGs) and, in the case of more specialised services (such as treatments for rare conditions), by NHS England. Over 50% of UHS services are paid for by CCGs and approximately 48% by NHS England. We provide these under a standard NHS contract, which incorporates ongoing monitoring of the Trust and the quality of the services provided. 10 Our structure UHS gained foundation trust status on 1 October 2011. A foundation trust is a public benefit corporation providing NHS services in line with the core NHS principles: that care should be universal, comprehensive and free at the point of need. The Trust is licensed as a foundation trust to provide these services by Monitor (the independent regulator, now part of NHS England and NHS Improvement) and the healthcare services we provide are regulated by the Care Quality Commission. Being a foundation trust has enabled greater local accountability and greater financial freedom and has supported the delivery of the Trust’s mission and strategy over a number of years. The diagram below provides an overview of the overall organisational structure of the Trust. Public and foundation trust members Council of Governors Board of Directors Executive Directors Division A Surgery Critical Care Opthalmology Theatres and Anaesthetics Division B Division C Cancer Care Emergency Medicine Helicopter Emergency Medical Services Medicine and Medicine for Older People Pathology Specialist Medicine Women and Newborn Maternity Child Health Clinical Support Division D Trust Headquarters Division Cardiovascular and Thoracic Neurosciences Trauma and Orthopaedics Radiology Corporate Affairs Communications Estates, Facilities and Capital Development Finance Human Resources Informatics Patient Support Services Procurement and Supply Transformation and Improvement (‘Always Improving’) Research and Development Strategy and Business Development 11 The Trust is also part of an integrated care system in Hampshire and the Isle of Wight, which is a partnership of NHS and local government organisations working together to improve the health and wellbeing of the population across Hampshire and the Isle of Wight. Our values Our values describe how we do things at UHS and act as a guide to all staff working with colleagues to deliver high quality patient care and a great patient experience every day. Our values are: Patients, their families and carers are at the heart of what we do. Their experience of our services will be our measure of success. Partnership between clinicians, patients and carers is critical to achieving our vision, both within hospital teams and extending across organisational boundaries in the NHS, social care and the third sector. We will ensure we are always improving services for patients through research, education, clinical effectiveness and quality improvement. We will continue to incorporate new ideas, technologies and create greater efficiencies in the services we provide. 12 Our strategy 2021-25 The Trust’s strategy was updated during 2020/2021 to take account of everything our staff had experienced during the COVID-19 pandemic and what we had learnt from this. The vision for UHS is to continue on its journey to become an organisation of world class people delivering world class care. Our strategy is organised around five themes and for each of these describes a number ambitions we aim to achieve by 2025. Theme Ambitions Outstanding patient outcomes, • We will monitor clinical outcomes, safety and experience of our experience and safety patients regularly to ensure they are amongst the best in the UK By 2025 we will strengthen our and the world. national reputation for outstanding • We will reduce harm, learning from all incidents through our patient outcomes, experience and proactive patient safety culture. safety, providing high quality care • We will ensure all patients and relatives have a positive experience and treatment across an extensive of our care, as a result of the environment created by our people range of services from foetal and our facilities. medicine, through all life stages and conditions, to end-of-life care. Pioneering research • We will recruit and enable people to deliver pioneering research and innovation in Southampton. We will continue to be a leading teaching hospital with a growing, reputable and innovative research and development portfolio • We will optimise access to clinical research studies for our patients. • We will enable innovation in everything we do, and ensure that ‘cutting edge’ investigations and treatments are delivered in Southampton. that attracts the best staff and efficiently delivers the best possible treatments and care for our patients. World class people • We will recruit and develop enough people with the right Supporting and nurturing our knowledge and skills to meet the needs of our patients. people through a culture that values • We will provide satisfying and fulfilling roles, growing our talent diversity and builds knowledge and through development and opportunity for progression. skills to ensure everyone reaches • We will empower our people, embracing diversity and embedding their full potential. We must provide compassion, inclusion and equity of opportunity. rewarding career paths within empowered, compassionate, and motivated teams. Integrated networks and collaboration We will deliver our services with partners through clinical networks, collaboration and integration across geographical and organisational boundaries. • We will work in partnership with key stakeholders across the Hampshire and Isle of Wight integrated care system. • We will strengthen our acute clinical networks across the region, centralising when necessary and supporting local care when appropriate. • We will foster local integration with primary and community care as well as mental health and social care services for seamless delivery across boundaries. • We will build on our successful partnership with University of Southampton (UoS), growing our reputation as a national leading university teaching hospital. 13 Theme Foundations for the future Making our enabling infrastructure (finance, digital, estate) fit for the future to support a leading university teaching hospital in the 21st century and recognising our responsibility as a major employer in the community of Southampton and our role in broader environmental sustainability. Ambitions • We will deliver best value to the tax payer as a financially efficient and sustainable organisation. • We will support patient self-management and seamless care across organisational boundaries through our ambitious digital programme, including real time data reporting, to inform our care. • We will expand and improve our estate, increasing capacity where needed and providing modern facilities for our patients and our people. • We will strengthen our role in the community as an employer of choice, a partner in delivery of services to our population and by leading the Greener NHS agenda locally. During each year of the strategy the Trust will set out a more detailed series of objectives to achieve and progress towards the delivery of its ambitions. In 2020/21 these objectives included: • Recovery, restoration and improvement of clinical services • Implementing the ‘Always Improving’ strategy • Restoring a full research portfolio • Continuing our focus on staff wellbeing including the long-term effects of coronavirus (long COVID) • Working in partnership with the newly established integrated care system • Creating a sustainable financial infrastructure • Making our corporate infrastructure (digital, estate) fit for the future to support a leading university teaching hospital in the 21st century, including an estates masterplan. Performance against these objectives will be monitored and reported to the Trust’s board of directors on a quarterly basis. Principal risks to our strategy and objectives The board of directors has identified and manages the principal risks to the delivery of its strategy and objectives through its board assurance framework. The principal risks to the delivery of its strategy and objectives identified by the Trust during 2020/21 were that: • it would be unable to form effective partnerships that achieve networked care for patients; • it could not develop the estate in line with the ambitions set out in the strategy; • it would fail to restore and increase capacity following the COVID-19 pandemic to meet waiting times for elective care and cancer care needs; • it would fail to introduce and implement new technology for the transformation of care; • it would be unable to retain, recruit, develop and train a diverse and inclusive workforce necessary to meet the strategic goals; • it could not develop a sustainable model within the new financial regime that preserves quality care; • it would fail to provide vulnerable service users with timely and high quality and appropriate care; • it would not reach the ambition of outstanding compliance and quality standards; • it could not sufficiently engage with key stakeholders and system partners to support effective interventions and maintain the health of the local population; • it would be unable to respond to the needs of the NHS in order to deliver our strategy; • it would fail to capitalise on its relationship with the universities in Southampton and other health education providers in line with our strategy; • it would not develop innovative education and training approaches. 14 While the COVID-19 pandemic presented the Trust with new risks as it introduced more stringent infection control processes, stopped certain types of activity and responded quickly to care for large numbers of seriously ill patients who had tested positive for COVID-19, it also prompted innovation across a wide range of areas. However the ongoing impact of the pandemic on both our staff, patients who have had COVID-19 and patients who have waited longer than expected for treatment as a result, added to the risks facing the Trust. National targets for performance have not been amended as a result of the pandemic, although the national plan has focussed on the recovery of activity levels as the first stage in a restoration of elective services. Capacity – The initial and subsequent waves of the COVID-19 pandemic have led to increases in the waiting times for patients and the number of patients waiting more than 52 and 78 weeks has increased significantly. While the Trust was able to recover capacity quickly between waves of the pandemic, its ability to reduce the overall waiting list and the length of time patients are waiting for treatment remains one of the key risks for the Trust. This may be compounded by the reduction in the number of referrals from GPs during the pandemic, leading to a potential future increase in the number of patients being referred as people visit their GPs for the first time with more advanced disease. During the pandemic the Trust utilised the support available from the independent sector to continue cancer treatment and surgery for those patients at highest risk. It also increased the number of outpatient attendances which took place by telephone or video call. The Trust developed a clinical assurance framework during the year to better assess the risk of harm to patients as a result of delays in treatment and this has been utilised in decision-making around the allocation of resources to those areas where there is the greatest risk of potential harm to patients. In addition to opening additional capacity during 2020/21 (described in the Estates section below), the Trust also committed expenditure and commenced construction works in 2020/21 in order to be in a position to open an additional endoscopy room and four further operating theatres during 2021/22 and prepared plans for a significant expansion in ophthalmology outpatient capacity. These initiatives will contribute to improvements in elective waiting times that needed following the pandemic. Quality and compliance – The Trust continued to monitor the quality of care delivered throughout 2020/21. During the COVID-19 pandemic the primary focus became infection prevention and control, with the launch of a successful COVID ZERO campaign that saw the Trust reduce the transmission of the virus in hospital (nosocomial transmission). The Trust also achieved its annual target for reduction in Clostridium Difficile infections, however, there was one MRSA Bacteraemia during March 2021, the only such event in 2020/21. The Trust continued to develop its proactive patient safety culture during 2020/21 with changes to the way in which patient safety incidents are investigated and the approval of its Always Improving strategy, which will be launched in 2021. Reporting and investigation of incidents continued during 2020/21. Partnerships – During 2020/21, the Trust and its partners worked together very effectively to discharge patients safely and provide ongoing support to patients who had tested positive for COVID-19, to ensure patients requiring urgent cancer treatment and surgery were able to continue their treatment in the independent sector and to develop a COVID-19 saliva testing pilot with the University of Southampton and local authorities. Work to respond to the COVID-19 pandemic, however, meant that as a system we were unable to progress the Hampshire and Isle of Wight strategic plan delivery at the pace we would have wanted or had set out to achieve, particularly the development of networks. Nonetheless the application for Hampshire and Isle of Wight to become an integrated care system was approved with effect from 1 April 2021. 15 Existing networks continued to develop and improve. The Trust also became the Wessex Cancer Surgical Hub during 2020 as a result of a national initiative with the aim of maximising the number of patients receiving curative surgery. Both the Wessex Cancer Alliance and the Trust ended the year as the second highest performing among their respective peers for cancer treatment. Workforce – While additional staff were recruited to specifically assist the Trust during the pandemic, the Trust continued to recruit nurses from overseas during 2020/21 meaning that the number of vacancies has reduced compared to the position prior to the pandemic. Changes to recruitment processes were approved in 2020/21 to improve the fairness, transparency and quality of these. The Trust also continued to work with its staff networks and specific focus groups to increase diversity in leadership roles. While workforce capacity continues to be one of the biggest challenges faced by the Trust, during 2020/21 our main focus has been on supporting our staff to respond to the COVID-19 pandemic and providing both the tools and time to help staff recovery. We are incredibly proud of the way that staff responded to the pandemic and continue to recognise this in whatever ways we can, however, we also want to ensure that staff continue to be able to contribute to patient care at their best and want to stay and develop with the Trust. Technology was also used at levels not previously achieved to continue to deliver training to staff and enable staff to work from home where possible, ensuring a safer environment for patients and staff in the hospitals. Estate – The Trust continued to invest in and develop its estate during 2020/21 including the opening a new general intensive care unit (GICU), a new operating theatre and a new cancer care ward, built in just six months. These were part of £80 million of capital expenditure in 2020/21. The Trust has also established a programme to reduce backlog maintenance in addition to continuing to add to and improve the environment in which services are provided to patients and the working environment for staff. Innovation and technology – There have been exceptional levels of achievement in relation to COVID-19 related research activity, including in partnership with the universities. You can read more about these from page 167 of the quality report. The board of directors also supported the funding of an expansion of research and innovation activity to allow the continued delivery of the Trust’s ambitions to innovate and improve and transform its services. Sustainable financial model – The Trust achieved its forecast breakeven position in 2020/21. Income was more predictable in 2020/21 as block contract arrangements were put in place in response to the COVID-19 pandemic and ensured that costs were covered. The Trust continues to maintain a strong cash position and to implement improvements and efficiency savings, allowing it to continue to invest in its services. 16 Summary of performance COVID-19 bed occupancy UHS has experienced two distinct peaks in inpatient care for patients with COVID-19 infection, with smaller numbers of patients continuing to receive care outside these peak times. Bed occupancy reached a maximum of 173 in the first peak in April 2020, and 322 in the second peak in January 2021. All bed types Intensive care/higher care beds 17 Emergency access through our emergency and eye casualty departments Public concerns about safety, government restrictions on the activities people were able to do, and the efforts of community services contributed to significant reductions in the total number of patients who presented to our departments. All patients presenting to the emergency department Many changes were introduced within our departments in the course of the year to ensure that emergency assessment and treatment could be provided safely, including wearing of protective equipment by staff and patients, providing care in separate areas for patients suspected or known to have COVID-19, and using rapid laboratory tests to identify infection and confirm/exclude COVID-19 as a cause. Emergency access performance (measured as the percentage of patients discharged from emergency department care or admitted to a hospital bed within four hours of arrival to the department) improved significantly in 2020/21 compared to previous years. The national target of 95% was not achieved, however, the performance of our departments compared favourably with the average for acute trusts in England. 18 Emergency access four hour performance 19 Elective Waiting times Demand We saw a significant reduction in the number of elective referrals to hospital in the early part 2020/21, though they had returned close to pre-pandemic levels by the end of the year. It is likely that this pattern relates to a range of factors including reluctance from members of the public to attend healthcare facilities at that time, changes to the ways in which primary care was accessed, and efforts made within primary and community to avoid hospital referrals needing to be made. Accepted referrals The number of patients referred to hospital with suspected cancer also reduced during 2020/21; 7% fewer patients were seen across the year as a whole, though referrals returned to pre-pandemic levels or higher from July 2020 onwards. Patients seen following ‘Two week wait’ urgent referral for suspected cancer 20 Activity UHS hospital appointments, diagnostic tests and elective admissions were all significantly reduced during 2020/21 due to the impact of COVID-19. • During periods of higher bed occupancy with COVID-19 it was necessary to significantly reduce the number of elective admissions undertaken in order that additional staff could work in intensive care. Less clinically urgent and therefore longer waiting patients were primarily those affected. • Throughout the year, additional infection prevention measures have reduced the number of patients that can be seen in each session, particularly when higher risk ‘aerosol generating’ procedures are planned, but also as a result of additional PPE being worn or to enable greater distancing of patients attending outpatient departments. UHS was offered additional capacity at local independent sector hospitals and used this effectively to minimise these adverse impacts. Approximately 30% of outpatient appointments are now undertaken by telephone or video, helping to maintain the capacity for patient care whilst reducing the infection risk for those patients and helping to maintain distancing measures for those patients still attending our outpatient departments. The graphs below show 2020/21 activity levels as a percentage of those achieved in the previous year. Elective admissions (including daycase) 21 Outpatient attendances Performance The average waiting time for first outpatient appointments has remained close to nine weeks for the majority of the year. UHS has however experienced very significant deteriorations in the waiting times our patients experience for diagnostic tests to be undertaken and elective treatment to be provided. The reduced number of new patients referred to hospital early in 2020/21 has moderated the extent of the growth in the total numbers of patients waiting, and the greatest rate of growth has unfortunately been amongst those groups of patients already waiting longest. 22 Diagnostics Our performance measures for diagnostics report on a total of 15 different frequently used tests. The waiting list is approximately 50% bigger than it was before the pandemic and stable through the second half of the year. At the end of the year 28% of patients were waiting more than six weeks to receive their investigation compared to the national target of 1%. The tests with the largest numbers of longer waiting patients include non-obstetric ultrasound, MRI and endoscopies, and further recovery will be driven through a combination of recruitment, independent sector capacity and an additional endoscopy room which opened at the start of April 2021. Patients waiting for a diagnostic test to be performed (sum of 15 different frequently used tests) Percentage of patients waiting over 6 weeks for a diagnostic test to be performed 23 Referral to Treatment Our waiting list from referral to treatment increased in size by 6% (2,220 patients) during 2020/21, rising when the recovery in referral numbers exceeded the recovery in clinical activity, the total increase in waiting list size would have been significantly higher had it not been for the significant reduction in the referrals received by the hospital especially during the early months of the pandemic. Looking forward, we anticipate referrals numbers returning to pre-pandemic levels, and being able to maintain the total size of our waiting list by delivering an equivalent number of treatments each month. Number of patients waiting between referral and commencement of a treatment for their condition The national target is that at least 92% of patients should be waiting for treatment no more than 18 weeks from their referral to hospital. Our performance against this measure is now 12% worse than one year ago, at 66%. Our performance continues to be typical of the major teaching hospital trusts that we benchmark with and the trend has been similar to that experienced across trusts in England. Percentage of patients waiting up to 18 weeks between referral and treatment 24 Unfortunately, the number of patients waiting significantly longer than the 18 week target has increased at a faster rate than the size of the waiting list as a whole. The graph below shows how the percentage of patients who have waited more 52 weeks increased. The number of patients who have waited more 52 weeks increased from 40 in March 2020 to 3,419 by March 2021 (of these 445 patients had waited more than 78 weeks). Such patients often require surgical treatment, particularly in the orthopaedic, ear nose and throat and oral surgery specialities. The impact on surgical care has been greater than that in outpatients during the pandemic, and it is also more challenging to increase capacity due to the need for additional operating theatres and a combination of different healthcare professionals to work within them. UHS opened an additional operating theatre in 2020/21, and has a further four theatres scheduled to open during 2021/22, which will make a significant contribution to our capacity to treat more patients. Unfortunately, the number of patients waiting significantly longer than the 18 week target is likely to continue to grow further in the short term, due to diagnostic investigations having been progressed less quickly than usual during the pandemic, the need to prioritise our increased treatment capacity according to the clinical urgency of conditions and because our scheduled capacity increases will not be completed before the autumn of 2021. Percentage of patients waiting more than 52 weeks, between referral and commencement of a treatment for their condition 25 Cancer Waiting Times UHS has been mostly successful in maintaining the timeliness of urgent services for patients with suspected cancer through the pandemic, and our performance has been amongst the best in both the south-east and nationally. UHS prioritised the theatre and intensive care capacity we were able to provide during the pandemic in order to meet the needs of those patients with the greatest clinical urgency, used capacity offered by independent sector hospitals to supplement that available within NHS, and operated a hub through which hospitals in Wessex were able to collaborate to continue critical cancer surgery during periods of peak COVID-19 demand. The national target is to provide the first definitive treatment to at least 85% of patients with cancer with 62 days of referral to hospital. Whilst UHS performance remained below this level in the majority of months, our performance has been significantly better than the national average, and has improved relative to other trusts. Treatment for Cancer within 62 days of an urgent GP referral to hospital 26 The national target is to provide the first definitive treatment to at least 96% of patients within 31 days of a decision to treat being made and agreed with the patients; both for the first and any subsequent treatments for cancer. UHS achieved this level on average across the year, and in the majority of months. The treatments provided are typically by means of surgery, chemotherapy/immunotherapy or radiotherapy. The most significant performance challenge this year has been in radiotherapy, where more sophisticated treatment plans improve patient outcomes but take longer to prepare, and there was also reduced treatment capacity whilst we replaced one of our ‘Linear Accelerator’ treatment machines with a new model. First definitive treatment for cancer within 31 days of a decision to treat Equality in service delivery Identifying and addressing health inequalities have been the central part of the Trust’s approach to improving the experience of care for our patients, families and carers. Over the past year, new initiatives have augmented progress on existing work to ensure there is appropriate support, due regard and recognition of those patients and their families and carers who are most at risk of poor experiences, outcomes and access to services. In 2020 we added two questions to our patient surveys, asking first if patients felt themselves to have a disability or require a reasonable adjustment, and, if yes, whether the Trust met this need. In 2020/21, the results were: TOTAL Had a disability / required a reasonable adjustment 27% Had this need met by the Trust (positive response) 95% This question was added to our major Friends and Family Test surveys as well as our local service-specific patient surveys. In June 2020 the Trust launched the sunflower lanyard scheme for hidden disabilities, participating in the national initiative to ensure that people whose disabilities are not visible are able to access further support and reasonable adjustments by means of a nationally recognised indicator (the sunflower). In 2020/21, 618 lanyards were issued with those needs recorded to ensure future reasonable adjustments are made for those individuals. 27 Carers have always been essential partners in the care that we provide, and having introduced a new post at the end of 2019 to focus solely on carer experience, this work has culminated in a Trust strategy for improving the involvement, support and experience carers have of our services. We have, over the past year, introduced carers cards, virtual peer support and carer-specific information about services while actively participating in local and regional work on carers. In January 2021 we realised our ambition of becoming an accredited ‘Veterans Aware’ hospital, with our submission of evidence being recognised as ‘strong’ and indicative of an organisation that has made great progress in helping to provide enhanced support for the armed forces community. Towards the end of 2019 we worked with the disability organisation AccessAble to produce accessibility guides for all of our services and estate. These online guides allow patients and visitors with disabilities to plan their journey and identify potential challenges to the environment. In 2020/21 our guides had 5,000 unique visits per month. One of our COVID-19 initiatives, a patient support hub, was set up in May 2020 to provide a single point of support for our patients who had been advised to shield. The service has grown and now offers support to patients and carers who are vulnerable, disabled or with additional needs. This includes coordinating community transport, arranging companions to assist with attending appointments, hosting a technology library to support those who are digitally excluded in accessing virtual appointments and information, and most recently receiving funding to pilot volunteer-led support for diabetes patients. Across the Trust, we continue to actively promote the importance of asking patients and carers about disabilities and reasonable adjustments, flagging needs on our patient administrative system to prompt our services to take proactive steps to ensure that any needs or adjustments are met on each and every visit. This has been of vital importance for meeting accessible information and communication needs. We are currently one of first trusts to pilot a new translation app that provides immediate interpretation into different languages, and we have worked closely with our communication support partners to ensure that where virtual appointments are needed, people with communication needs (BSL, foreign language) are supported to access care virtually. Our specialist nursing liaison teams continued to support access to services throughout the pandemic, ensuring that patients with dementia, with learning disabilities and autism, were supported to attend hospital where necessary. Further information about the Trust’s work in relation to equality, diversity and inclusion can be found on page 69 and pages 106 and 160 in the quality report. Going concern After making enquiries, the directors have a reasonable expectation that the services provided by the Trust will continue to be provided by the public sector for the foreseeable future. For this reason, the directors have adopted the going concern basis in preparing the accounts, following the definition of going concern in the public sector adopted by HM Treasury’s Financial Reporting Manual. David French Chief Executive Officer 28 June 2021 28 Accountability report Directors’ report Board of directors The board of directors is usually made up of six executive directors and seven non-executive directors, including the chair. Since 1 January 2021 the number of non-executive directors has been reduced by one as Jane Bailey’s reappointment as a non-executive director was deferred to allow her to lead the Hampshire and Isle of Wight saliva mass testing programme. Jane is expected to return to the board of directors in her non-executive director role by 1 July 2021. Paragraph B.1.2 of the NHS foundation trust code of governance provides that at least half the board of directors, excluding the chair, should comprise non-executive directors determined by the board to be independent. Pending the reappointment of Jane Bailey as a non-executive director, the Trust has been operating with one fewer non-executive directors than is required by the Trust’s constitution and the Trust has been non-compliant with this paragraph of the code. During this period the provisions of the Trust’s constitution that a quorum for meetings of the board of directors requires at least one non-executive director and one executive director to be present and for the chair to have a second and casting vote in the case of an equal vote continued to apply. The board of directors has given careful consideration to the range of skills and experience it requires to run the Trust. Together the members of the board of directors bring a wide range of skills and experience to the Trust, such that the Board achieves balance and completeness at the highest level. The chair was determined to be independent on his appointment and the other non-executive directors have been determined to be independent in both character and judgement. This included specific consideration of Jane Bailey’s continued independence following her role leading the Hampshire and Isle of Wight saliva mass testing programme. The chair, executive directors and non-executive directors have declared any business interests that they have. Each director has declared their interests at public meetings of the board of directors. The register of interests is available on the Trust’s website. 30 The current members of the board of directors are: Non-executive directors Peter Hollins Chair Peter graduated in chemistry from Hertford College, Oxford. Joining Imperial Chemical Industries in 1973, he undertook a series of increasingly senior roles in marketing and then general management. Following three years in the Netherlands as general manager of ICI Resins BV, in 1992 he was appointed as chief operating officer of EVC in Brussels – a joint venture between ICI and Enichem of Italy. He played a key role in the flotation of the company in 1994, before returning in 1998 to the UK as chief executive officer of British Energy where he remained until 2001. From 2001, he held various chairmanships and non-executive directorships. In 2003, he decided to return to an executive role as chief executive of the British Heart Foundation in which post he remained until retirement in March 2013. He joined Southampton University Hospital Trust as a non-executive director in 2010, became senior independent director and deputy chairman of UHS in 2014 and was appointed chair in April 2016. Trust roles: • Chair of remuneration and appointment committee • Chair of governors’ nomination committee Jane Bailey Non-executive director In 1985, Jane joined the pharmaceutical company Glaxo as a management trainee, having graduated from London University with a degree in environmental science and pharmacology. Here she rose to senior commercial vice-president, gaining experience of a broad range of disease areas across different regions of the world. She specialised in leading global research and development teams in the formation of strategies to bring new medicines to patients. She also worked to ensure that the medicines developed were supported by robust evidence demonstrating their clinical and cost-effectiveness. In delivering this she gained extensive experience of leading large diverse teams across a complex global organisation. For five years, Jane ran her own strategy development consultancy, working across a breadth of healthcare organisations. In 2017 Jane gained an MSc in public health, with distinction, at King’s College, London University. Her studies focused on how to ensure the public are engaged in development of healthcare services and how social theories can help inform effective disease prevention and management. Jane is a director of Wessex NHS Procurement Limited, a joint venture between the Trust and Hampshire Hospitals NHS Foundation Trust and a director of Healthwatch Portsmouth. Trust roles: • Deputy chair and senior independent director • Chair of finance and investment committee • Audit and risk committee member • Charitable funds committee member • People and organisational development committee member • Remuneration and appointment committee member • Wellbeing Guardian 31 Non-executive directors Dave Bennett Non-executive director Dave graduated in chemistry from the University of Southampton before entering management consulting, becoming a partner in Accenture’s strategy practice. In 2003 he joined Exel Logistics (later acquired by DHL), managing the company’s healthcare business across Europe and the Middle East. During this time, he established NHS Supply Chain, a UK organisation responsible for procuring and delivering medical consumables for the NHS in England, as well as sourcing capital equipment. Dave joined the board of Cable & Wireless as sales director in 2008. He later set up his own strategy consulting practice serving the healthcare sector, completing numerous projects in the UK and the US. Dave has also served as a non-executive director at The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust between 2009 and 2016, where he chaired the Trust’s quality committee. Dave is a non-executive director at the Faculty of Leadership and Medical Management and a director of Royal College of General Practitioners (RCGP) Enterprises Ltd and RCGP Conferences Ltd. Trust roles: • Chair of charitable funds committee • Chair of finance and investment committee (from 1 January 2021) • Audit and risk committee member (from 9 February 2021) • Quality committee member • Remuneration and appointment committee member • Chair of Trust’s organ donation committee 32 Non-executive directors Cyrus Cooper Non-executive director Cyrus Cooper is professor of rheumatology and director of the MRC Lifecourse Epidemiology Unit. He is also vice-dean of the faculty of medicine at the University of Southampton and professor of epidemiology at the Nuffield Department of Orthopaedics (rheumatology and musculoskeletal sciences, University of Oxford). He leads an internationally competitive programme of research into the epidemiology of musculoskeletal disorders, most notably osteoporosis. His key research contributions have been: • discovery of the developmental influences which contribute to the risk of osteoporosis and hip fracture in late adulthood • demonstration that maternal vitamin D insufficiency is associated with sub-optimal bone mineral accrual in childhood • characterisation of the definition and incidence rates of vertebral fractures • leadership of large pragmatic randomised controlled trials of calcium and vitamin D supplementation in the elderly as immediate preventative strategies against hip fracture. He is president of the International Osteoporosis Foundation, chair of the BHF Project Grants Committee, an emeritus NIHR senior investigator, a director of The Rank Prize Funds and associate editor of Osteoporosis International. He has previously served as chairman of the Scientific Advisors Committee (International Osteoporosis Foundation), the MRC Population Health Sciences Research Network and the National Osteoporosis Society of Great Britain. He has also been president of the Bone Research Society of Great Britain and has worked on numerous Department of Health, European Community and World Health Organisation committees and working groups. Cyrus has published extensively on osteoporosis and rheumatic disorders and pioneered clinical studies on the developmental origins of peak bone mass. In 2015, he was awarded an OBE for services to medical research. Trust roles: • Quality committee member • Remunerati
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Engaging for increased research participation - full report

Description: Engaging for increased research participation Public and healthcare professionals' perceptions For further information contact: Chris Stock Head of R&D communications and strategy University Hospital Southampton NHS Foundation Trust T: 07795506319 / E: christopher.stock@uhs.nhs.uk Ben Hickman Research director Alterline Research T: 01616050862 / E: ben.hickman@alterline.co.uk This report presents independent research funded in part by the National Institute for Health Research (NIHR) Clinical Research Network: Wessex. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Contents 1. Executive summary 1.1. Headline findings and recommendations 1.1.1.People are positive about research and participation 1.1.2. The critical conversations are not happening 1.1.3 Healthcare professionals perceive major barriers to involvement 1.1.4 The public need information, of immediate relevance to their health 1.1.5 Time and fitting participation into life is a concern 2. Introduction and Methodology 2.1. Introduction 2.2. Key objectives 2.3. This report 2.4. Method 3. Review of the literature 3.1. General background 3.2. Why do people take part in clinical research? 3.3. What stops people from taking part in clinical research? 3.4. Why do people take part, or not take part, in related activities? 3.5. Summary 4. Likelihood to participate in clinical research 4.1. The public view clinical research as important 4.1.1. Demographic Differences 4.2. Few people have been asked to take part in clinical research 4.3. Likelihood to participate 4.3.1. Demographic differences 4.4. Likelihood to participate in various types of research 5. Motivations for taking part 5.1. Why do other people take part in clinical research? 5.2. What would motivate you to take part? 5.2.1. Demographic differences 5.3. Exploring motivations in more depth 6. Barriers to taking part 6.1. Why don't other people take part? 6.2. What stops you from taking part? 6.2.1. Demographic differences 6.3. Exploring barriers in more depth 6.4. What do people mean by the `risks' involved? 6.5. How are people forming opinions about risk? 6.6. What might reassure people? 7. The experience of taking part in clinical research 7.1.What motivated people to take part? 7.2. Would people recommend the experience? 7.3. Why would people recommend the experience? 7.4. Why would people not recommend the experience? 7.5. Knowing someone who has taken part 7.6. Why would people be more likely to take part, knowing someone who has? 7.7. Why would people be less likely to take part, having known someone who has? 4 4 4 4 4 4 5 6 6 6 7 7 8 8 9 9 10 11 12 12 12 14 15 15 16 18 18 18 19 19 22 22 22 24 24 26 27 28 29 29 29 29 31 31 31 32 Engaging for increased research participation ? key findings and recommendations 2 8. Knowledge and information 8.1. Level of understanding of clinical research 8.1.1. Demographic differences 8.2. Seeking information 8.3. What information would you need? 8.4. Media coverage 9. Healthcare professionals' perceptions of clinical research 9.1. What do healthcare professionals think of clinical research? 9.2. Who do they think are getting involved in research? 10. Motivations for getting involved in clinical research 10.1. What motivates healthcare professionals to get involved? 11. Barriers to getting involved in clinical research 11.1. What stops healthcare professionals from getting involved? 12. Research opportunities 12.1. Approaching healthcare professionals 12.2. Why are healthcare professionals approaching patients? 12.3. Why are healthcare professionals not approaching patients? 13. Availability of information 13.1. Awareness of clinical research 13.2. Finding information about clinical research 14. The future 14.1.What would make you more likely to get involved in research in the future? 14.2.What would make you more likely to get speak to patients the future? 15. Conclusions and recommendations 15.1. People are positive about research and participation 15.2. The critical conversations are not happening 15.2.1. Recommendation 1 15.3. Healthcare professionals perceive major barriers to involvement 15.3.1. Recommendation 2 15.4. The public need information, of immediate relevance to their health 15.4.1. Recommendation 3 15.5.Time and fitting participation into life is a concern 15.5.1. Recommendation 4 Appendix 1 ? Public survey demographics 33 33 33 34 34 35 37 37 38 39 39 41 41 43 43 44 44 45 45 46 47 47 48 49 49 49 49 49 49 50 50 50 51 52 Engaging for increased research participation ? key findings and recommendations 3 1. Executive summary See section 15 for summary findings and specific recommendations for increasing clinical research participation. 1.1.1 People are positive about research and participation The Wessex population views research in the NHS positively and a large proportion are open to participating: 90% of respondents think that it is important for the NHS to support research into new treatments, whilst 47% think it likely they would be willing to participate in clinical trials in the future. Those that have participated have positive perceptions, and they will likely have a significant influence on others' future participation: 80% of people who have taken part in clinical research would recommend taking part to a friend or family member, whilst around half (44%) of people who know someone who has taken part in clinical research said that they are more likely to participate now because of their experience. 1.1.2 The critical conversations are not happening Only 15% have had clinical research discussed with them by a healthcare professional in their lifetime, whilst only 5% of those who have seen healthcare professional in the last 12 months had clinical research discussed with them. Recommendation 1: Communications supporting participation in interventional trials should be focussed on enabling effective clinical conversations, with a reduced emphasis on broad public awareness approaches. 1.1.3 Healthcare professionals perceive major barriers to involvement The healthcare professionals interviewed were broadly positive about research; however they cite workload, time and lack of local trial information as constraints on discussion of research with patients. Better trial information was also identified as something that would increase the likelihood of discussing trial options with patients. Clinicians self-segregate themselves into `researchers' (an academically orientated minority) and `practitioners', with the latter positive about the benefits of clinical research and open to research referrals/facilitation but unlikely to have direct involvement in, or lead their own, research. Direct involvement in research by clinicians is limited by lack of programmed/sanctioned time within work plans, perceptions of excessive bureaucracy and lack of support. Recommendation 2: Local Clinical Research Networks, local research infrastructure and Trusts' senior leadership should support NHS clinicians' engagement with local clinical trials, and to explore management and education interventions to make communication with patients about trials a routine part of all NHS consultations. 1.1.4 The public need information, of immediate relevance to their health Public participation motivations centred on potential benefits to one's own health or that of close friends and family, whilst perceived risk of harm and receiving the `unknown' alongside concerns over time commitments and time off work were the biggest barriers to participation. Only 9% of respondents reported that they felt they understood clinical research very well, with this group the least likely to agree that risk was a significant barrier to participation. Generic online searches, condition-specific online sources of information and healthcare professionals were the primary sources of information, with a high degree of trust in the information provided by professionals. Recommendation 3: Public communications and engagement should have a greater emphasis on informing and empowering people at the point of care or enquiry, to enable discussion of trials with clinicians. Engaging for increased research participation ? key findings and recommendations 4 1.1.5 Time and fitting participation into life is a concern Concerns over time commitments needed to participate in studies, including taking time out of work and fitting such activity into daily/family life were significant barriers to participation. Recommendation 4: Changes to clinical research delivery to improve convenience and flexibility for participants, alongside interventions that lower the practical threshold to participation should be investigated and evaluated. Engaging for increased research participation ? key findings and recommendations 5 2. Introduction and Methodology 2.1 Introduction The partnership between University Hospital Southampton NHS Foundation Trust (UHS) and the University of Southampton enables clinical-academics to perform clinical research through quality assured support, facilities and resources embedded at the heart of a major teaching hospital trust. This partnership hosts, and participates in the National Institute for Health Research Clinical Research Network Wessex (NIHR CRN:Wessex), one of 15 regional CRNs that coordinate and support clinical trial activity across the UK on behalf of the NIHR. Participation in clinical research by the public, patients and clinicians is essential to advancing medicine and care, and access to such trials is a right conferred to patients under the NHS constitution1. Because of this, recruitment to trials is the primary measure by which NIHR manages performance of CRNs and their member organisations. Rapid, complete recruitment to open trials remains challenging for Trusts and CRNs nationwide, indicating a significant issue relating to public and patient engagement with trial treatment options and research participation. Against this background UHS, with match-funding from NIHR CRN:Wessex, commissioned Alterline Research Ltd. to conduct a programme of market research to better understand the perceptions, motivations and barriers to participation in clinical research across the region. This research is intended to inform more effective communication and engagement aimed at increasing participation, primarily focussed on interventional clinical research. 2.2 Key objectives The research was conducted with three audiences: ? The public (18 years and older across all demographics and geographies) ? Primary care professionals including GPs and community nurses across the region. ? Hospital clinical staff including consultants, nurses, midwives and allied health professionals across the region's trusts. The research outputs are intended to provide an evidence base to help: ? ? ? ? Shape and inform effective engagement strategies with these audiences Build an evaluation framework against which engagement can be assessed and developed for greater efficacy Ensure coherence and commonality in engagement approaches and messages across Wessex Provide a reference point and baseline data for long-term tracking and evaluation. 2.3 This report This report details findings of the research with the public and healthcare professionals, exploring their attitudes towards clinical research, their likelihood to participate and the drivers and barriers to increasing participation and recommending actions for increasing research participation. > > > 1 NHS Constitution, 2013 http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Documents/2013/the-nhs-constitution-forengland-2013.pdf Engaging for increased research participation ? key findings and recommendations 6 2.4 Method Review of literature and pilot A review of the existing literature was conducted to help inform the design of research materials including the quantitative and qualitative questionnaires. Quantitative questionnaire development A questionnaire comprising predominantly closed questions and a small number of open-ends was developed in partnership with the Trust. Quantitative public survey by telephone In total 1101 interviews were completed by telephone using specialist computer assisted telephone interviewing (CATI) software and an automated dialler system. The interview sample for the telephone survey was sourced from a specialist data provider using relevant postcodes. In order to ensure a representative survey sample of the Wessex population interview completions were monitored by key demographics such as gender, age and location. See appendix one for details of the demographic sample. Public depth survey Following the quantitative survey, key emerging themes were used develop a qualitative, in-depth survey which was administered by telephone. In total, 30 people took part in in-depth interviews including a mix of men and women, different ages and geographies. Clinician depth survey To explore perceptions, motivations and barriers of clinicians, an in-depth survey was designed and administered by telephone. In total, 25 healthcare professionals took part in the survey, including 6 GPs, 10 nurses, and 9 hospital consultants. Analysis The quantitative survey data was exported to SPSS (Statistical Packages for Social Sciences) where it was quality checked. Frequencies and cross-tabulations exploring differences between respondents were produced and key questions were charted and included in this report. Demographic differences have been included in this report following the application of tests of statistical significance. Open-ended data was themed, with key verbatim quotes pulled out and included in the report. The in-depth interviews were audio recorded and transcriptions were made. Key themes were identified from the focus group transcripts and representative verbatim quotes have been pulled out and included in the report. Engaging for increased research participation ? key findings and recommendations 7 3. Review of the literature 3.1 General background Clinical research is central to advancing medicine, developing and evaluating medications, treatments, and practices. The purpose of this review is to examine perceptions of clinical research, willingness to participate and motivations and barriers to taking part. As the research in the area is limited, it will also look at motivations and barriers to taking part in related, voluntary activities (i.e. giving blood and organ donation) in order to identify any commonalities. Generally, reports in the literature show support for clinical research to be high. The Wellcome Trust notes that 95% of adults and 93% of 13-18 year olds think that medical research should be supported2. Further 88% of those surveyed by the National Institutes of Health3 in the USA think that clinical trials are important for advancing knowledge about treating disease. A 2011 UK national survey of 990 adults by IPSOS-MORI, commissioned by the Association of Medical Research Charities, reported similarly strong public support for research with 97% believing the NHS should support research into new treatments, whilst 93% wanted their local NHS to be encouraged or required to support research. These figures are corroborated by a 2014 national survey of 3,000 adults commissioned by the National Institute for Health research, indicating that 95% of people said it was important to them that the NHS carries out clinical research4.5. Reported willingness to participate in research is also strong. In a monitor of people's views on science and research, 60% said they would be willing to take part in clinical trials6. 72% of those polled in the 2011 AMRC survey would want to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life; 80% would consider allowing a researcher confidential access to their medical records, and 88% would be happy to be asked to talk to researchers about their family history or give a sample of their blood for laboratory testing. 89% of people surveyed in the 2014 NIHR national survey would be willing to take part in clinical research if they were diagnosed with a medical condition or disease, with only 3% saying they would not consider it at all5. Comis et al7 report that, in relation to cancer trials, 32% of adults would be willing to take part and 38% would potentially be interested, but would hold some reservations. Further, willingness to participate is not static and much depends on the nature of the trial. For example, 74% of people would be willing to allow access to their medical records, whereas only 30% would be willing to test a new drug2. These figures showing positive perception and willingness to participate are however in stark contrast to reported and actual participation rates. In two monitors by the Wellcome Trust, lifetime participation varied from 10%6 to 23%2, whilst a further 10% of people have a family member who has taken part6. These findings support National Institute for Health Research official figures indicating that annual recruitment to clinical trials in the English NHS stands at 0.94% of the English population (2013-14 figures)8, with CRN Wessex reporting recruitment of 1.15% of the regional population in the same period9. > > > Butt, S., Clery, E., Abeywardana, V., Phillips, M. (National Centre for Social Research). Wellcome Trust Monitor 1. London: Wellcome Trust; 2010 National Institutes of Health, National Cancer Institute. (1997). Results from Quarterly Omnibus Survey: Clinical Trials Questions-April 22, 1997. Bethesda: National Cancer Institute. 4 IPSOS-MORI / Association of Medical research Cahrities J11-02572 Public support for research in the NHS, http://www.ipsos-mori.com/ researchpublications/researcharchive/2811/Public-support-for-research-in-the-NHS.aspx 5 National Institute for Health Research, 2014, http://www.crn.nihr.ac.uk/blog/news/nine-out-of-ten-people-would-be-willing-to-take-part-inclinical-research/ 6 Clemence, M., Gilby, N., Shah, J., Swiecicka, J., Warren, D. (2013). Wellcome Trust Monitor Wave 2: Tracking public views on science, biomedical research and science education. London: Wellcome Trust. 7 Comis, R.L., Miller, J.D., Aldige, C.R., Krebs, L. and Stoval, E. (2003). Attitudes toward participation in cancer clinical trials. Journal of Clinical Oncology. 21: 830-835. 2 3 Engaging for increased research participation ? key findings and recommendations 8 3.2 Why do people take part in clinical research? By far, the most reported reason for taking part in clinical research in the literature was a sense of altruism and helping others. Mattson et al10, found that 65% of participants took part for altruistic reasons. Rosenbaum et al11 noted that 46% of people who participated in clinical research reported altruism as the reasons for doing so. Of those people, just under half (45%) provided an altruistic reason as their only motivation. Those who gave altruistic reasons were more likely to have higher levels of social support, have a college education, and were less likely to say they had a disability. Specifically in cancer trials, altruism is often reported as a reason for taking part12. Jenkins et al13 report that 23% of those who consented to take part in clinical research did so because others would benefit from their participation. Many people also said that they took part because of healthcare professionals. Some report that this was because of a recommendation from their doctor3 and others report that it was through the doctor's influence that they decided to take part14. Jenkins et al13 looked solely at people who had decided to take part after being asked by their doctor. Of those who were asked, 72% decided to take part, of which 21% said it was because they trust their doctor. Further, it is apparent that some people also take part in clinical research because of the benefit that it will have to them. Such motivations include a hoping that there will be a therapeutic benefit or because there is no other treatment available12. Further, in Mattson et al10 74% of participants for aspirin and beta-blocker trials said they were motivated by non-altruistic motivations. These motivations included better medical monitoring and reassurance, physical improvement and preventions of further illness. 3.3 What stops people from taking part in clinical research? A concern about side effects and risks present a significant barrier to participation in the literature. Looking into cancer trials, a fear of making the cancer worse presented a significant barrier when being asked to participate15. Further, when testing a new drug, 93% of those with concerns in the Wellcome Trust study said they were worried about the possible risk to their own health from participating2. As with many factors, concerns about the side effects and risks of a trial are not stable across all groups. Basche et al16 spoke to seniors who were asked to participate in cancer trials. They found that those ages 65?75 were more likely to participate in the trial when the side effects were likely, than those aged over 75. Further, many studies report that issues related to the time commitment of clinical research and logistical difficulties also present a significant constraint on participation. A quarter of people asked about their attitudes to participation in clinical research said that they did not have the time to participate17. Further, a third of people in Basche et al16 said that they were concerned about the time commitment and other issues, such as getting to the trial facility. Many other barriers have been reported in the literature. These include: a dislike of randomisation13 and the potential to be in a placebo group; lack of knowledge of both the processes involved in clinical research19 and the trials that are available18, and a lack of trust in medical research19. > > > NIHR Clinical Research Network Annual Report 2013/14 http://www.crn.nihr.ac.uk/wp-content/uploads/About%20the%20CRN/13_14%20Annual%20Performance%20Report_PUBLIC_FV.pdf 9 CRN Wessex Performance Report May2014, www.odp.nihr.ac.uk/default.htm 10 Mattson, M.E., Curb, J.D., and McArdle, R. (1985). Participation in a clinical trial: The patients' point of view. Controlled Clinical Trials. 6: 156-167 11 Rosenbaum, J.R., Wells, C.K., Viscoli, C.M., Brass, L.M., Kernan, W.N., and Horwitz, R.I. (2005). Altruism as a reason for participation in clinical trials was independently associated with adherence. Journal of Clinical Epidemiology. 58: 1109-1114. 12 National Institutes of Health, National Cancer Institute, Working Group on Enhancing Recruitment to Early Phase Cancer Clinical Trials. (2004). Enhancing Recruitment to Early Phase Cancer Clinical Trials: Literature Review. Bethesda: National Cancer Institute. 13 Jenkins, V. and Fallowfield, L. (2000). Reasons for accepting or declining to participate in randomised clinical trials for cancer therapy. British Journal of Cancer. 82(11): 1783-1788. 14 Chu, S.H., Jeong, S.H., Kim, E.J., Park, M.S., Park, K., Nam, M., Shim, J.Y., and Yoon, Y. (2012). The views of patients and healthy volunteers on participation in clinical trials: An exploratory survey study. Contemporary Clinical Trial. 33: 611-619 15 Solomon, M.J., Pager, C.K., Young, J.M., Roberts, R., and Butow, P. (2003). Patient entry into randomized controlled trials of colorectal cancer treatment: Factors influencing participation. Surgery. 133(6): 608-613. 16 Basche, M., Baron, A.E., Eckhardt, S.G., Balducci, L., Persky, M., Levin, A., Jackson, N., Zeng, C., Brna, P., and Steiner, J.F. (2008). Barriers to enrollement of elderly adults in early-phase cancer clinical trials. American Society of Clinical Oncology. 4(4): 162-168 8 Engaging for increased research participation ? key findings and recommendations 9 Although little literature looks into healthcare professionals' motivations regarding clinical research, several have looked at the barriers to getting involved. The research suggests that concerns for patients represent significant barriers to participation. In in-depth interviews with clinicians in South-west England, clinicians suggested that concerns for individual patients and respect for patients' preferences for different treatments prevented them from approaching patients and getting involved20. Further, concern for patients and a worry about the impact on the doctor-patient relationship was shown to be a significant barrier in Ross et al's meta-analysis21. 3.4 Why do people take part, or not take part, in related activities? Many reasons, both similar and dissimilar to those expressed above, are noted in the literature that motivate blood and organ donation. Coad et al22 found that those who knew someone who had donated or received an organ were more likely to agree with donating an organ to a family member or friend. Further, Wildman and Hollingsworth23 note that those who have donated blood before are more likely to donate again. Further, Cohen and Hoffner24 note that self-interest explains motivations to become an organ donor. 40% said they would be willing to sign a blood donor card. Self-interest motivations were the most important predictor of willingness to sign the card, including pride and satisfaction with the decision, otherwise known as the `warm glow' feeling. A questionnaire of university students in Japan showed that being in good health, having time to donate, being given opportunity to donate and helping others were the most important motivations for those who both had given blood before and those who had not25. The same study also looked at barriers to taking part. These were very much the opposite of the motivators, and included having time to donate, not knowing when and where to donate and not being given the opportunity to donate were considered barriers to taking part25. Lack of knowing where to go and it not being in a convenient place was corroborated by a further study of American adults, as well as a fear of needles and pain26. 3.5 Summary In summary, although many people believe that clinical research is important and are willing to take part, this is not reflected in rates of participation. Reasons why people take part in clinical research include altruism, the influence of a healthcare professional and a benefit to themselves. Major barriers to participation include the risk to themselves and time commitments. Clinician barriers generally revolve around a concern for their patients. Significantly different motivators and barriers to taking part in related activities include knowing someone who has taken part, taking part before and knowing what opportunities were available. > > > Bevan, E.G., Chee, L.C., McGhee, S.M. and McInnes, G.T. (1993). Patients' attitudes to participation in clinical trails. British Journal of Clinical Pharmacology. 35(2): 204-207 18 Mills, E.J., Seely, D., Rachlis, B., Griffith, L., Wu, P., Wilson, K., Ellis, P., and Wright, J.R. (2006). Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. Lancet Oncol. 7: 141-148 19 Lovato, L.C. and Kristin, H. (1997). Recruitment for controlled clinical trials: Literature summary and annotate bibliography. Controlled Clinical Trials. 18: 328-357 20 Langley, C., Gray, S., Selley, S., Bowie, C., and Price, C. (2000). Clinicians' attitudes to recruitment to randomised trials in cancer care: A qualitative study. Journal of Health Services Research and Policy. 5(3): 164-169 21 Ross, S., Grant, A., Counsell, C., Gillespie, W., Russell, I., and Prescott, R. (1999). Barriers to participation in randomised controlled trials: A systematic review. J Clin Epidemiol. 52(12): 1143-1156 22 Coad, L., Carter, N., and Ling, J. (2013). Attitudes of young adults from the UK towards organ donation and transplantation. Transplantation Research. 2: 9-14 23 Wildman, J., and Hollingsworth, B. (2009). Blood donation and the nature of altruism. Journal of Health Economics. 28: 492-503 24 Cohen, E.L. and Hoffner, C. (2012). Gifts of giving: The role of empathy and perceived benefits to others and self in young adults' decisions to become organ donors. Journal of Health Psychology. 18(1): 128-138 25 Ngoma, A.M., Goto, A., Yamazaki, S., Machida, M., Kanno, T., Nollet, K.E., Ohto, H. and Yasumura, S. (2013) Barriers and motivators to blood donation among university students in Japan: Development of a measurement tool. Vox Sanguinis 105(3): 219-224 26 Adelbert, J.B., Schreiber, G.B., Hillyer, C.D., and Shaz, B.H. (2013). Blood donations motivators and barriers: A descriptive study of African American and white voters. Transfusion and Aphresis Science. 48(1): 87-93 17 Engaging for increased research participation ? key findings and recommendations 10 4. Likelihood to participate in clinical research 4.1 The public view clinical research as important To provide a background to people's perceptions of clinical research, we asked respondents to tell us how important they thought it was for the NHS to support research into new treatments. As figure 1 below shows, the overwhelming majority of people (90%) think that it is either important or very important. However, of those who responded to the survey, only 10% have actually taken part in clinical research. There is a clear gap between how important the area is seen to be, and how many people are taking part. Figure 1 g1 How important do you think it is, if at all, for the NHS to support research into new treatments for patients? Base: 1101 3% 6% 13% 77% Very unimportant g3 unimportant Neither important nor unimportant Important Very important 4.1.1 Demographic Differences Age Belief that supporting research is important is lowest in 18-24 year olds (73%). As people get older, they are more likely to believe that it is important, peaking at 96% for 75-84 year olds. Gender Females (95%) a more likely to say supporting research is important than males (85%). Educational attainment Those who have qualifications other than a degree are the most likely to view research as important (97%). Those who have no educational qualifications are least likely (80%). Employment status Students (90%), retired people (83%) and those who are employed (76%) are more likely to see clinical research as important, compared to those who are self-employed (69%), home-makers (67%), or gout of work and not looking for work (55%). 7 Dependents Those with dependents (96%) are more likely to view clinical research as important than those without dependents (90%). Health Those with good (80%) or very good health (80%) are more likely than those with fair (70%) or very bad (54%) to view research as very important. Previous participation Those who have participated in clinical research (99%) are more likely to say supporting research is important than those who have not (89%). g8 Knowing someone who has taken part Those who know someone who has taken part in clinical research (97%) are more likely to see supporting research as important, compared to those who don't (89%). > > > Engaging for increased research participation ? key findings and recommendations 11 g7 g7 4.2 Few people have been asked to take part in clinical research g8 g8 Importantly, of those surveyed, only 15% recalled a time when a healthcare professional had discussed involvement in clinical research with them. Further, of the 43% who had seen a healthcare professional in the last month, only 5% had clinical research discussed with them (Figure 2, below). Figure 2 Did the healthcare professional you saw discuss involvement in clinical research with you? Base: 367 5% Do you recall a time at any point in your life when a healthcare professional has discussed clinical research with you? 15% Base: 799 Yes No 95% Yes No 85% Increasing the number of conversations taking place between clinicians and their patients about clinical research is likely to increase the number of people who take part. In the in-depth interviews, people often said they reason they had not taken part before was because no-one had ever asked. "I just haven't been asked." "No-one's ever asked me." Further, previous research has shown that trust in healthcare professionals is high, with 72% of adults saying that they trust a medical professional to provide them with information about clinical research27. This was also seen in the in-depth interviews, where many respondents expressed a great deal of trust for their doctor. "So if they said `blardy blardy blah', would you take part? Then I probably would have done, because we gained that much trust." g1 "Yes I would trust them if they talked about clinical research because the consultant I've been under for four years now, my GP I've known for over 20 years now so they're people that I've known long enough to trust." 4.3 Likelihood to participate Although only 10% of people have taken part in clinical research, the results would show appetite for participation is higher than this. When respondents were asked if they would consider taking part in clinical research, just under half (47%) agreed that they would be likely or very likely to (Figure 3, below). Figure 3 How likely is it that you would be willing to participate in clinical research in the future? g3 Base: 1101 15% 16% 22% 31% 16% Very unlikely 27 unlikely Neither likely nor unlikely likely Very likely Butt, S., Clery, E., Abeywardana, V., Phillips, M. (National Centre for Social Research). Wellcome Trust Monitor 1. London: Wellcome Trust; 2010 g7 > > > 12 Engaging for increased research participation ? key findings and recommendations 4.3.1 Demographic differences The demographic differences below explore whether some people are more likely than others to participate. Characteristics of people who are more likely to participate include: ? ? ? ? ? ? ? ? ? Having previously participated (64%) or knowing someone who has (63%) Having a good understanding of clinical research (63%) Students (58%) and those unable to work (63%) Having a degree or equivalent level of education (58%) Registered organ donors (58%) People in very good health (57%) People who do regular volunteer work (55%) People who have given blood (54%) People aged 35-64 (52%). Age People aged 35-64 (52%) are most likely to agree that they would be willing to take part in clinical research, this decreases amongst 25-34s (48%), 16-24s (46%), 65-74s (49%) and in particular 75-84s (32%) and 85+ (12%). Understanding of clinical research Those who have a very good understanding of clinical research (63%) are the most likely to say they would take part in clinical research, followed by those that have some (54%), little (40%) or none (39%). Previous participation Those who have participated before (68%) are more likely to say they would be willing to take part than those who have not (45%). Knowing someone who has taken part People who know someone who has participated in clinical research (63%) are more likely to say that they are willing to take part than those who don't (44%). Educational attainment Those with a degree or a degree equivalent (58%) and those who have other qualifications (52%) are more likely than those with no qualifications (35%) to say they would take part. Employment status Students (66%), those who are unable to work (62%), and those who are employed for wages (52%) are more likely to say they are willing to take part than those who are those who are retired (37%) and out of work and looking (26%). Volunteers Those who give help as a volunteer to clubs or organisations weekly (55%), monthly (53%) or occasionally (54%) are more likely to say they are willing take part than those have volunteered in the last year (46%) and those who give unpaid help on an individual basis (36%). Giving blood People who have previously given blood (54%) are more likely to say they would participate than those who have not given blood (45%). Organ donors Those who are registered as organ donors (58%) are more likely to say they would participate than those who are not (42%). Health Those who have very good (57%), good (49%) and bad health (47%) are more likely to say they are would take part than those who have very fair (35%) or bad health (32%). > > > Engaging for increased research participation ? key findings and recommendations 13 4.4 Likelihood to participate in various types of research To expand on people's likelihood to take part, we asked people about different scenarios they would be willing to take part in. As shown in Figure 4 (below), the scenarios that might improve their own health or care are those in which people were most willing to participate . Likelihood to participate extends to 61% in the scenario where it may help prolong a respondents' own life, or where it is looking at new forms of care and exercise to regain movement after a knee injury. In contrast, the scenarios which people were least willing to take part reflected those which were at earlier stages of the research process. This may be because research into new medications or treatments is seen as riskier. Figure 4 How likely is it you would be willing to take part in clinical research if...? Base: 1101 The study might help prolong or improve your life because you have a condition, significant illness or injury The study is looking at a new form of care and exercises to regain movement after knee injury The study is observing how your condition, illness or injury develops or responds to current treatments, over time The study is looking at how the way care is given affects you and your health (e.g. care at home versus staying in hospital) The study is looking at a new medical device 9% 6% 9% 9% 9% 10% 8% 11% 12% 11% 11% 9% 9% 11% 12% 15% 17% 18% 24% 19% 22% 23% 21% 23% 24% 22% 22% 40% 42% 43% 44% 44% 39% 39% 40% 39% 21% 19% 17% 15% 14% 17% 12% 9% 10% The study is looking at a treatment at a very advanced stage of development The study is looking for healthy volunteers The study is looking at a new vaccination The study is looking at a new drug The study is looking at a treatment in the very early stages of development 11% 19% 25% 35% 10% Very unlikely Unlikely Neither likely nor unlikely Likely Very likely Engaging for increased research participation ? key findings and recommendations 14 5. Motivations for taking part 5.1 Why do other people take part in clinical research? In order to understand what motivates people to take part in clinical research, we asked respondents to tell us what they thought motivated other people to take part. The most commonly cited reasons were: ? Helping others/altruism ? A positive impact on their own health ? A personal interest in a particular disease/condition. 5.2 What would motivate you to take part? To look into motivations further, we asked people what would motivate them (rather than others) to take part in clinical research. When people are speaking about their own motivations, they tend to agree more with statements which are related to personal motivations, i.e. helping to improve their own, or a close relative's, health. However, altruistic motivations are still important, with 72% agreeing that they would be motivated by helping others. Respondents also indicated that other things would motivate them, beyond those factors seen earlier. Knowing that aftercare would be available (67%) and an interest in a particular disease (67%) are both seen as important to respondents. Just 32% of respondents said that money would motivate them to take part. Figure 5 To what extent do you agree or disagree that the following would motivate you to take part in a clinical trial? Base: 1101 g5 Supporting research into a condition a close family member suffers from A positive impact on my own health Getting access to the latest treatments for a condition I have Helping others by helping to find new treatments Knowing that there would be continued aftercare and follow-up A personal interest in a particular disease / condition I would find the process of being involved interesting Money / financial gain 6% 5% 12% 6% 5% 6% 5% 6% 7% 7% 6% 7% 8% 8% 10% 13% 15% 15% 19% 17% 22% 36% 42% 48% 44% 51% 45% 44% 47% 15% 35% 28% 30% 21% 22% 23% 14% 25% 7% 17% Strongly disagree Disagree g6 Neither agree nor disagree Agree Strongly agree > > > Engaging for increased research participation ? key findings and recommendations 15 5.2.1 Demographic differences Understanding of clinical research Those who have no understanding of clinical research (58%) are the least likely to agree that they would be motivated by getting the latest access to treatment for a condition they have. Age 35-44 year olds (76%) are more likely to agree that they would be motivated by helping others by finding new treatments than 16-24 (70%) and 25-34 (64%) year olds. 34-44 (86%), 44-54 (85%) and 55-64 (84%) years olds are more likely to agree that they would be motivated by a positive impact on their own health than 16-24 (64%), 25-34 (70%) and 75-84 (64%) year olds. 35-44 (77%), 45-54 (80%) and 55-64 (78%) year olds are more likely to agree that they would be motivated by getting access to the latest treatment for a condition they have than 16-24 (64%), 25-34 (67%), 75-84 (70%) and 85+ (53%) year olds. Gender Women (80%) are more likely than men (75%) to agree that supporting research into a condition a close family member suffers from would motivate them to take part. Educational attainment Those with a degree of degree equivalent and those with other qualifications are more likely than those who have no qualifications to say they are motivated by helping others by helping to find new treatments, a positive impact on their own health, getting access to the latest treatment for a condition they have and supporting research into a condition a close family member suffers from. Employment status Students (90%) are more likely to agree that they are motivated by helping others by helping to find new treatments than those who are employed (76%), self-employed (70%), retired (66%) and out of work and looking (50%). Employed persons (77%) are more likely to be motived by getting access to the latest treatment for a condition they have than those who are retired (71%). Students (96%) are more likely than any other group to strongly agree that they are motivated by supporting research into a condition a close family member suffers from. 5.3 Exploring motivations in more depth When exploring what would motivate people to take part some clear themes emerged from both the open survey questions and the in-depth interviews,. The key motivations are summarised below. It would have a positive impact on my own health Many felt that they would be motivated to participate because it may have a positive impact on their own health. "I've got a few health problems so I would like to take part to see if there any treatments or information in regards to arthritis that would help me" "I have arthritis - anything new to improve life or find a cure." "Finding a drug that helps me." "If anybody could help me with my lifestyle and my health, I'm in a lot of pain, I'm overweight, so that would help." Although some people who responded did not currently suffer from a condition, they suggested they would be motivated to take part if they did and it would help that condition. "I still think the key motivation for me to do it would be if there was something detrimental to my health or something for my health and well-being to improve my lifestyle." "Of course I would, if I had a condition that required treatment and was offered something that would alleviate that." > > > Engaging for increased research participation ? key findings and recommendations 16 Further, some suggested that they would take part as a last resort if nothing else would help their condition. "If I had something that was as of yet untreatable I'd give it a go, but otherwise no." "If I was in an unfortunate situation of having a life threatening illness then I tend to think you grasp at anything." Altruistic motivations and helping the people around me A willingness to help with clinical research relating to a condition that those close to them suffer from was evident in people's responses. "Because my mother has dementia." "In recent years a lot of people I know have suffered from cancer and arthritis." "I suppose its family history, we have had a run in with cancer so I suppose we would be interested in getting involved." "My son's diabetic, anything that would help." Respondents also suggested that they were motivated by a more general altruistic sense of helping others. "Because I want to help people." "If it helps give people a better life." "It's being out there trying to help somebody that is unable to help themselves." It will help advance medical science Some respondents expressed that they would be likely to take part because it may help improve medicine and medical science. "Because it is interesting and it helps the process of medical science." "I feel if people don't participate then science will not advance, for everyone's benefit." "It is important to help the development of medicine and if people aren't helping then there would be no progress and it wouldn't get anywhere." I would find it interesting Respondents said that they would be motivated to take part in various types of trials because they found it interesting. "I find that really quite interesting, I quite like a bit of psychology myself, I'd like to see what goes on in their heads to make it go one way or the other." "Yeah that's a fascinating thing, it's just so clever!" "I'm quite interested in exercise and diet." "Because it would be interesting to see how your health can be affected by those types of things." > > > Engaging for increased research participation ? key findings and recommendations 17 Because I've taken part before Those who had already taken part in clinical research suggested they would again because of their previous experience. "Previous experience in a clinical trial." "Already have been part of a clinical trial for cancer. So far it is a beneficial experience." "I have already taken part and thought it helped." "I have previously been part of a clinical trial and had a good experience." Money Earning money through participating was a clear motivation for a minority of people. "Depending on what the cash incentive was. I wouldn't participate in it if there was no financial gain because of the dangers behind it." "It would depend what it was in aid of and if it was for money." "If there was a large pay out I would take part." Engaging for increased research participation ? key findings and recommendations 18 6. Barriers to taking part 6.1 Why don't other people take part? We also looked into the barriers to taking part in clinical research. When asked what may stop other people from taking part, respondents mentioned: ? Being worried about the risks ? Lack of knowledge/information ? Lack of time to be involved. 6.2 What stops you from taking part? In order to explore this further, respondents were asked what would stop them personally (rather than others) from taking part. Respondents' answers reflected concerns about the risks involved in clinical research, a lack of knowledge and information, and practical issues with time and having to take time off work. When prompted, it was clear that there were other issues which concerned respondents. For some, the involvement of private drug companies (33%) and stories they have seen in the media (31%) would stop them from taking part in clinical research. Figure 6 To what extent do you agree or disagree that the following would stop you from taking part in a clinical trial? Base: 1101 g6 I'm worried about the risks g5 4% 11% 8% 7% 10% 12% 10% 20% 24% 28% 27% 32% 19% 19% 19% 28% 25% 42% 32% 35% 32% 25% 25% 19% 16% 32% 46% 14% 15% 14% 10% 6% 8% 6% 6% 5% 5% I might need to take time off work I don't have time to participate I don't know enough about clinical trials The involvement of a private drug company Stories I have seen in the media I wouldn't pass the medical screening test 37% 32% 44% 34% 20% 34% My family and friends would disapprove I'm not the type of person the NHS want to participate in clinical trials My religious or moral beliefs 18% 12% 25% 17% 16% 11% 5% Strongly disagree Disagree g9 Neither agree nor disagree Agree Strongly agree > > > Engaging for increased research participation ? key findings and recommendations 19 6.2.1 Demographic differences Understanding of clinical research Those who have a very good understanding (41%) are the least likely to agree they are worried about the risks, rising with some understanding (55%), little understanding (60%) and no understanding (62%). Those who have no (50%) or little understanding (48%) are more likely to agree that they don't have the time to take part than those with some (40%) or very good understanding (37%). Age Those aged 85+ (70%) are the most likely to say that not knowing enough about clinical research stops them from taking part. Those ages 75-84 (43%) and 85+ (59%) are the most likely to think that they are not the type of people the NHS want to take part. Gender Women (62%) are more likely to say that a worry about the risks would stop them from participating than men (52%). Women (48%) are also more likely to worry about needing time of work than men (43%). Educational attainment Those with no qualifications are least likely to agree that they are worried about the risks of participating (50%), that they don't have the time to participate (39%), and that they may need to take time off work (33%). However, this group are the most likely to agree (27%) that they are not the type of person the NHS wants to participate. Employment status Those who are unable to work are least likely to agre
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