Sharing Is Caring: Why The Pharma Industry Must Work Together To Encourage Patients To Share Their Data

Contributed Commentary by Steve Arlington

August 22, 2018 | So far in 2018, it seems hardly a day goes by without yet another headline reporting yet another company misusing our data, with stories like the Facebook and Cambridge Analytica debacle continuing to run. From who’s got it, to how is it being used, and who is sharing it without our permission, our personal data appears to be becoming less personal by the day. This has significant implications when it comes to personal patient, health, and fitness data, where the impact could be particularly worrisome. The recent breach of DNA testing site, MyHeritage—where a whopping 92 million accounts were accessed by hackers—and the even bigger breach of 150 million users of the MyFitnessPal app, are stark examples.

A database breach of your email provider that results in you having to change your password is no doubt irksome—but it can be swiftly dealt with and the damage quickly limited. But health data is another matter entirely. You can’t, after all, change your DNA like you can your password or credit card number. In the face of all this bad news, it’s not surprising that the general public are increasingly worried about how their data is being used and who has access to it, and are subsequently reducing what they share and upping their privacy parameters. Data are the lifeblood of research and development, so what impact might this reticence to share data as personal as our DNA and our genomes mean for the pharma industry?

For The “Greater Good”

Pharma needs access to data like that from MyHeritage (in conjunction with other datasets) to tackle the biggest healthcare problems facing patients and society at large. Additionally, if patients want to see continued ground-breaking developments in advancing precision medicine, or newly discovered treatments for Alzheimer’s, they must be encouraged to share data for the “greater good” and feel secure in doing this. Another factor driving the need for data is artificial intelligence, in which public interest has never been higher. AI algorithms are voracious consumers of data, and if we want our AI platforms to give “true” results, data must not only be accurate but drawn from a diverse group of ethnicities, ages, and biological profiles.

Part of the answer to this conundrum will be educating the public that there is a need for all of us to altruistically share data to contribute to progress. For instance, Veritas can sequence your entire genome for $999 and put it into a mobile application; the app has an option to share DNA data with a trainer, but the value of this data would be far greater to scientists seeking treatments for disease. Encouraging users to share this kind of intensely-personal data will certainly be a difficult task, but it is a vital one, and it will require all stakeholders to share expertise and collaborate. From increasing public awareness of how their data could benefit research, to building a secure platform to store it, to analyzing data for its scientific insight. And it goes without saying that regulatory input from the likes of the FDA and EMA will be needed.

Tech Is Both The Problem And The Cure

Though it might seem counterintuitive, given that our trust in technology is falling—research finds users in the US, Western Europe, and parts of APAC, won’t trust a website if it even takes longer than expected to load—technology will be the answer. Consider blockchain, which has great potential to enable safe data sharing. Our own research found 60% of life science executives believe blockchain’s greatest impact will be in the storage of medical records and genomic data. Genomic or DNA data could conceivably be stored in the “blocks” of a block chain, and the individual then given the “key” or “keys” to allow controlled and secure access to it by them and others. To be successful, this kind of health blockchain will require the input of both science and technology experts, but the concept shows the potential of tech solutions to promote safe sharing.

Other avenues include purpose-built applications—different from commercial, paid apps such as Veritas’s, and designed to encourage altruistic sharing. The Pistoia Alliance is actively investigating development of a proof-of-concept “Data Donation and Feedback App” to explore this further. The app would address the current challenge of an individual’s health data being siloed by securely aggregating it, helping to provide users with a holistic view of their health, and also allowing others to access that data to assist drug development or patient treatment. It would link to your Electronic Health Record, match you with clinical trials, enable more effective feedback to you of the results of those trials, and crucially, allow you to consent to data donation with verified providers. To continue development of the app, more partners are now being sought.

Ultimately, if the pharma industry wants to access data to support R&D and lead to breakthroughs, it must seek to partner with peers both within and from outside the industry. One other compelling reason for greater collaboration is the need for interoperability of data platforms. Today, we see a host of patient data solutions developed without common standards, which will only reduce their effectiveness. Part of our mission at The Pistoia Alliance is to be a vehicle to bring together such solutions in a precompetitive environment—to ensure the benefits of industry innovation can be widespread. Improving trust is the responsibility of all of us, and we look forward to collaboratively enabling the public to share data and feel safe while doing do.

Steve Arlington is the president of the Pistoia Alliance, a position he has held since 2015. Steve’s career began in the 1970s, and he has worked in the pharmaceutical and diagnostics industry for over 40 years. Steve began as a research scientist in the field of immunology, and developed and launched many products in this arena. He is a retired partner from PwC and led the Pharmaceutical Team in Advisory Services, and also previously led the IBM Life Sciences and Pharmaceutical Global Teams. He can be reached at