Yes to transparency, yes to data sharing
Published 02 September 2019
Patients want to donate their health data to research, but they also want a transparent system where they are fully in control of their data.
Noga Leviner encourages you to share all your health data, and she offers a unique perspective in the debate around patient privacy and data sharing. She is herself a patient who wants to donate her own health data, but only with full transparency on how it will be used. She’s also the CEO of a digital health startup that is dedicated to compiling and making health records available to patients and science. For her, she does not have to choose a side.
After being diagnosed with Crohn's Disease, Noga was shocked to discover how hard it was for patients to access their own medical records in the highly fragmented healthcare system. “It was nearly impossible to navigate, especially when you’re dealing with an illness,” she remembers.
Her experience became her inspiration to launch PicnicHealth in 2014. Once authorised by the patient, the app works by collecting and managing all their available healthcare records. “We do whatever it takes to go and get those medical records” says Noga. PicnicHealth then organises the data in a Personal Health Record: a readable, coherent timeline that allows patients to take their health records with them wherever they go. Simultaneously, PicnicHealth creates a longitudinal real-world database, available for research.
Having a holistic view of all health records, from blood tests to x-rays, allows patients to be fully in control of all of their data and empowers them to take charge of their health, which Noga dismally mentions, is relatively unique for patients.
But compiling these records also opens up possibilities to use that incredibly rich, real-world data to contribute to research in new ways never before imagined. “It is an absolute tragedy to let it sit unused; we’re losing out on potential life-changing improvements,” says Noga.
Who do you trust?
Everyone, not just patients, are concerned about transparency when it comes to data sharing and privacy. For these reasons, it was paramount for Noga and her team that PicnicHealth users are always fully in control of their data and understand how it will be used.
“Ultimately, patients also want research to happen. They want to contribute to the bigger picture, they want better care for their disease and new treatments. The resistance comes from the use of data in a non-transparent way, in ways that weren’t made clear from the beginning,” says Noga.
Partnering with patients and their data
David Wormser, Group Head, PHC Data Science Neuroscience at Roche, is working together with Noga and PicnicHealth to bring all this valuable data to a place where it can contribute to research. “Our partnership with PicnicHealth is a completely different way of working with health data. Here we are working directly with patients, where they are the gatekeepers of their medical records. They consent and influence data sharing decisions, fully aware of what is shared with us and how it will be used,” says David.
The partnership led to FlywheelMS, a five-year research study on the epoch of patient privacy and transparent data sharing that was launched in June 2018. It will combine the health records of 5,000 people living with multiple sclerosis (MS) into a single database. Roche researchers hope this will help them gain a clearer idea of how and why MS impacts people in different ways and eventually find the right treatment for each individual patient.
People living with MS sign up to PicnicHealth and give their consent to allow Roche access to their anonymised medical records. For participating in this real world data study, patients gain an immediate benefit: a free subscription to PicnicHealth (usually it charges a monthly fee). They receive their comprehensive medical history and are empowered to make better informed healthcare decisions. In return, researchers obtain what might just be the highest quality, most complete real-world MS dataset available.
Transparency is the way forward
PicnicHealth is collecting incredibly detailed data that has the potential to reshape our understanding of disease and treatments. Therefore embedding patient centricity and trust at the core of the partnership is absolutely essential. Noga points out with FlywheelMS: “We’re really modeling what participatory research can look like. There doesn’t have to be a conflict between patient participation in research and producing very high-quality real-world data.”
There are already plans to launch similar projects with PicnicHealth in the area of Rare Disease and neuroscience, as well as include other health biomarkers like genomic testing and patient reported outcomes. “At the end of the day we understand the disease better, learn what matters to patients and ultimately create better, more lasting treatments,” says David.