New Participant Engagement Platform in development for Rare Disease Patients and their caregivers

Genomics England announced in May 2020 that they were collaborating with Precision Medicine start-up, Sano Genetics, and data management firm, Zetta Genomics to develop a patient engagement platform for Rare Disease Patients and their caregivers.

The platform would enable the patients and their caregivers to add vital information about their health and wellbeing to research databases.

The ability to collect this vital patient-derived data would help Genomics England researchers to “fill in the blanks” between infrequent doctor visits. The data being collected will highlight changes in disease progression and treatment effectively from the patient and their families perspectives.

Rakhi Rajani, Chief Digital Officer at Genomics England 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.

“The PHG Foundation’s report is an encouraging assessment that assures us the platform will help accelerate precision medicine research while ensuring that the highest levels of data security and integrity are met along the way.”

The PHG Foundation report has assessed the impact of the platform’s features and applications on patients.

It’s found that the system potentially offers opportunities to enrich existing datasets, such as those held within Genomics England’s National Genomic Research Library, and will also help enhance engagement with patients undergoing treatment.

Support for patients who are less digitally literate has been recommended in the report, and includes considerations for policymakers. Clarity, personalisation and engagement with patients could provide a blueprint for realising the promise of the technology, while minimising potential harm was also suggested in the report.

CEO and co-founder of Sano Genetics, Dr Patrick Short, comments: “In the world of precision medicine research, the participant, once they’ve contributed their data, often gets very little direct benefit.

“There has long been little to no incentive, and plenty of hassle, to take part in a study that might change the state of play for sufferers of a chronic or rare disease in 10 to 15 years’ time. That’s just an unacceptably long timeframe for improving lives.

“A thoughtfully designed participant engagement platform that offers users total transparency around how their data is used, coupled with a superb user experience, is long overdue but it’s critical that we get the framework right the first time so it’s right that it be subjected to rigorous external scrutiny by independent bodies, especially in the development phase.

“The PHG Foundation’s assessment of the legality and ethics of what we’re doing provides us with a robust blueprint that will be fundamental in our ongoing product development.”

Read more about the report and patient engagement platform here.

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