But how will the platform work, how does it benefit its users and what steps are in place to make sure that it is ethical?
Taking part in research can be difficult for rare disease patients and their families. Even for those who are enthusiastic about participating, there are many factors that can cause concern, including uncertainty around data security as well as time and travel commitments. A new platform that connects patients to researchers is being developed to change that.
One of the ongoing problems for precision medicine clinical trials is participation. Both recruiting enough participants and retaining existing participants can be difficult, and this can cause costly delays. Up to 85% of trials fail because they can’t retain enough participants, so why do so many people drop out?
There are many reasons for this. Some factors, such as poor patient experience, can be attributed to those running the study, but others are logistical in nature, such as difficulty travelling to hospitals or test centres regularly, especially when these do not coincide with other appointments. Some patients also have concerns about how secure their data is, or how it will be used.
The new platform
The platform will allow better communication between rare disease patients who want to participate in research and the researchers who are running studies, with the hope of improving the patient experience and speeding up the development of new treatments.
When the plan was announced, Genomics England participant panel chair Jillian Hastings Ward, said: “Many patients and their families are keen to work with researchers to better understand their health conditions. Tools which enable this to happen effectively could lead to exciting new discoveries.”
The platform will have a number of benefits, including:
- giving patients or their carers the ability to add information about their health and wellbeing between medical appointments, providing further insight into disease progression and the patient experience;
- providing patients with a way to share their thoughts and feedback on research proposals and priorities, and to browse new and ongoing studies that they may wish to be involved in;
- a two-way ‘matchmaking’ function, to allow researchers to specify criteria to find participants for their studies, and for patients to find studies that they could be interested in taking part in; and
- the ability for patients to see information about studies they have participated in and visualise their contribution to research.
Legal and ethical implications
The report suggests three main strands of recommendations to ensure the platform is developed in a way that supports the project’s aims and minimises potential harm:
- Clarity – everyone involved needs to be informed about the “benefits, burdens and risks” associated with using the platform and participating in research.
- Personalisation – “functionality and content” must be able to be tailored to the participant’s wishes – for example, they may consent to whole genome sequencing but may not want to know about incidental findings. The platform should not allow them to stumble onto information they did not want to know.
- Engagement – a genuine and ongoing commitment to consulting with patients at every step of the platform’s development.
If these recommendations are followed, the report suggests that the platform offers “unprecedented opportunities to enrich the National Genomic Research Library dataset and to build participant engagement with research”.
Genomics England chief digital officer Rakhi Rajani said: “Co-creating an innovative and intuitive platform alongside participants is crucial for engaging them in medical research. No one knows what patients and their caregivers need more than they do themselves, so we must create solutions together, using collaborative methods. Patients are at the heart of our work at Genomics England, and we are committed to ensuring our participants and their data are protected.”
For the latest news and updates about the platform, visit the Genomics England website.