Clinerion: As the app is mainly about ‘gathering patient reported outcomes’ – what is, in your view and from your experience, the best way to gather this data? How do we best approach patients and convince them to use these kinds of apps (especially patients who would be reluctant, in the first place)?
V. Keunen: The Andaman7 platform has been built to enable patients to collect ALL of their health data, whatever the source. That means medical data (eg. from hospitals and doctors) but also nutrition, activity, sleep, genetic data, etc. And the sources are hospitals, labs, pharmacies, wearables (consumer or medical grades), patient reports, gene analysis companies, and so on. All of this with a global approach: Andaman7 supports more than 20 languages.
For hospitals, labs, etc., there are two main ways to get access to health data for a company wishing to provide services around those data sets. If you follow the B2B or the B2C approach, either you connect directly to the source of the data (hospital, lab, pharmacy, etc., or you rely on patients to get all of their health data from those same sources and then work with the patients. The second solution is probably more difficult technically and more problematic to organize, but it’s much easier to achieve, if considering regulatory constraints and privacy issues.
Note that getting data directly from patients also guarantees a fresher data set and the inclusion of other kinds of PRO (Patient Reported Outcomes) and subjective feedback.
To get the most complete and rich dataset, it’s probably best to use both.
Studies show that 85% of patients agree to share data with research if they have given consent first and if they stay in control of their data. Basically, patients say it loud and clear: if you don’t abuse my data, then I’m ready to contribute to the common good.
Clinerion: You built the whole Andaman7 project following a personal story – that of a cancer survivor – and your son also has encountered health issues, as you explain on your website. A lot of people who were affected themselves by diseases start their own technology and/or advocacy projects in order to improve things. Also, we see that people with rare or serious diseases are often more willing to share their personal data, report it through apps, and so on. In both cases, how can we make the ‘healthy’ people be willing to contribute more?
V. Keunen: People that have had a serious condition understand better the benefit of sharing their data to contribute to research. Take my personal case: both my son and I were diagnosed with (different forms of) cancer. In my case, I was able to take a super-effective pill with almost no side effects (Gleevec) to keep the cancer under control. My son had to go through many months of chemotherapy, then radiotherapy, and finally had his leg amputated ... a pretty terrible outcome, and so much more dramatic than mine. You can imagine the strong willingness it has created in me to contribute to research to find new targeted drugs for my son’s form of cancer and for all these other kids.
For healthy people, it’s less direct, although we all have relatives fighting serious conditions. What I really believe is that people will agree to share their data for research if it's used for the common interest and if they are able to see the results of their contributions. Hence, two very important features of Andaman7 are:
- 1/ always ask explicit consent of patients, specify what data points will be shared and for what purposes (this is GDPR at its core).
- 2/ inform patients of the outcomes of their sharing their data (for example via “return data to patients after a clinical trial” and similar initiatives, whose goal is to keep patients engaged in the long term).