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Engaging for increased research participation - full report

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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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