Why it is getting easier for patients to share their data?

Some readers may ask why we need a health data transaction platform and is it just another Personal Health Record for storing the data? We’ll get to the first question later, but in regards to the second, we’re not just a data storage platform although you can store your health data securely with healthbank. Earlier this year we saw Apple and several partners launch ResearchKit, a mobile tool that enables you to share health data from your mobile phone to researchers conducting medical research in areas such as Parkinson’s, asthma, diabetes and breast cancer. The most important part of the ResearchKit announcement is less the app itself and more in terms of policy innovation embodied in the consent form used to enroll participants in the studies. Typically, participants in studies must work their way through a stack of consent forms that are obtuse and controlled by Institutional Review Boards at research institutions. The IRBs tend to be very conservative and the consent process not only may not be fully understood by participants but the legal language may not come across as transparent from a patient perspective.

For the ResearchKit app Apple worked with some large universities and Sage Bionetworks in particular, to create a simplified, more user-centric form of consent that gives the user much greater control over whom they will share their data with. Participants can see exactly who will have access to their data and how it will be used, plus they can withdraw consent at any time. The result: during the first month nearly 30,000 patients enrolled in an asthma study and for all of the apps combined the first 36 hours after launch saw more people recruited into studies than it would normally take a year for 50 medical research centers! Results like this prove that the number of people who are willing to share their data with clinical researchers is actually quite large if we can make the process easier, protect participant privacy and have platforms that users can trust.

Only 4% of Americans are aware of a clinical trial that they could participate in and the difficulty of finding and retaining participants in trials is one of the issues that contributes to the growing cost of creating new medications. Reducing the transaction costs for conducting clinical trials and innovating in how we keep participants engaged has the potential of lowering the costs of drug development and contributing to overall population health outcomes downstream. This issue is beginning to change the way we think about trials and participation and how to frame the overall ethics of research.

Data Transaction PlatformAt healthbank we think incentivizing sharing of data through rewards or financial incentives and creating a secure place to store your data combined with a cooperative business model creates a necessary component to both share the benefits of sharing data and bring down the costs of drugs. In a way we provide an ethical infrastructure that can help address one of the problems that has been in the news lately with the high costs of medications charged by pharmaceutical companies. The next generation of innovation in digital health will need to address the costs of clinical trials, availability of health data and engagement of patients in clinical research. Building the infrastructure that enables patient control of data as well as sharing of data is a first step to making drugs more affordable.

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