A new version of our My Health Record app has been developed for rare disease patients in the 100,000 Genome Project to manage their health at home and access support.
An app for Southampton patients has been redesigned to support patients with a rare disease and their families who are taking part in the 100,000 Genome Project.
The app, My Health Record, gives patients more control, enabling them to self-manage their condition while they are away from the hospital. It also provides a constant link with their clinical team, who can log in and track their progress, meaning that any problems can be spotted and treated earlier.
Building on past success
The app, built using Microsoft’s HealthVault software, has already seen success with inflammatory bowel disease (IBD) patients. IBD is a chronic condition, with flare ups where the gut becomes inflamed and sore. Patients could use the app to message the clinical team or access the phone number for their ‘flare line’, keep a food diary and see their upcoming appointments.
Patients with prostate cancer have also been given the opportunity to use the app after their initial treatment, allowing them to look back at their blood test results and see their health records and other relevant documents. They could also go through the pre-assessment forms they need to complete prior to surgery, saving around half an hour in their appointment.
Advancing genomic medicine
The 100,000 Genome Project is a national initiative that aims to identify the underlying genetic causes of cancer and rare diseases by analysing the genome – a person’s complete set of genetic information. Southampton is one of 13 centres across the UK collecting 100,000 samples from patients and their relatives in an effort to build a new genomic medicine service for the NHS.
Appointments to sign up to take part in the project can be lengthy, with large amounts of information to take in. Rare disease patients and their family members who decide to use the app will be able to look through the consent forms and information sheets before their appointment and use the secure messaging system to ask any questions.
While the plan is to start off with just a few patients from the project using the app, the hope is that this will grow with time to enable more of Southampton’s participants to benefit from it.
Posted on Wednesday 13 July 2016