Last year, some of our colleagues launched The Heart Hive project. This year for World Heart Month, we thought we could catch up with those colleagues to see how the project was going.
An innovative new approach to involving patients in research is helping people with heart muscle disease, such as cardiomyopathy and myocarditis, take part in improving understanding about their condition.
Dr James Ware & Dr Angharad Roberts and the Cardiovascular and Precision Genomics group at the MRC LMS have developed The Heart Hive to help the 300,000 people in the UK that suffer with heart muscle disease to contribute to understanding these progressive heart conditions and to developing new treatments and better care.
In response to the feedback from patients and with support from Cardiomyopathy UK charity, The Heart Hive launched in November 2019 after a successful Crowdfunder campaign and currently is open for registration for people with either: a diagnosis of cardiomyopathy or myocarditis, a family history of cardiomyopathy or a genetic risk of cardiomyopathy.
Today, the Heart Hive is growing an online community of research-willing participants with these conditions, allowing this community to connect directly with researchers and help them make a difference.
For researchers this works to address the challenge of recruiting larger numbers of patients and maintaining participant engagement: large cohorts are often required for well powered studies, which can be difficult for single institutions to recruit and highly stratified studies may require a set of very specific characteristics which would benefit from having a large pool of participants to identify rare subsets.
Participants register with a smart phone or computer, provide some basic information about themselves and their condition and then view the various studies that they are eligible to take part in. Participants are the custodians of their own data, decide which researchers can share their information and self-enrol in studies that interest them. The Heart Hive offers an interactive eConsent process and straightforward ways to gather information from participants such as health surveys and regular follow-ups.
The first study on the Heart Hive has been launched and is recruiting patients with dilated cardiomyopathy (DCM) and hypertrophic cardiomyopathy (HCM) in the UK. Participants can sign up without having to travel to a clinic, saliva kits are sent through the post to collect genetic information. Initial sign up rates have been encouraging and patients really are keen to get involved and help make a difference.
The Heart Hive is open to applications from researchers with an ethically approved project and a recognised sponsoring institution and enquiries are welcome.