Google’s AI company DeepMind is on a mission to rebrand its health initiative with a patient engagement forum held last month at their headquarters in King’s Cross and changes to their website that put a more patient-friendly face on the company. The changes come months after the enormous backlash DeepMind Health faced over Streams, an app DeepMind has developed to aid with early detection of Acute Kidney Infection (AKI).
The Streams app garnered widespread criticism in April when New Scientist released the details of an agreement between the Royal Free National Health Service (NHS) Trust and DeepMind to share a massive store of patient information. The one-year agreement, according to New Scientist, “gives DeepMind access to a wide range of healthcare data on the 1.6 million patients who pass through three London hospitals run by the Royal Free NHS Trust – Barnet, Chase Farm and the Royal Free – each year. This will include information about people who are HIV-positive, for instance, as well as details of drug overdoses and abortions. The agreement also includes access to patient data from the last five years.”
While Royal Free and DeepMind Health both maintain that patient consent for the information was implied as it related to their direct care, news of the agreement raised concerns as many of the patients had never complained of any kidney issues and much of the shared data seemed irrelevant to the goal of detecting AKI. DeepMind defended the need for such information, stating that early detection of AKI required a wide scope of data due to the complications involved in its diagnosis. Early symptoms of AKI are often nebulous, and the causes leading to its development are unknown. Because no clear subset of data can be isolated as necessary for detection and patients unaware of kidney problems could be diagnosed at any time, DeepMind asserts that it required all patient information to inform its algorithm and help diagnose new cases.
In the wake of DeepMind’s PR disaster, their rhetoric has swung dramatically toward improving their health initiative and Streams through greater patient involvement and feedback. Last month, DeepMind held an open forum in London to address concerns about DeepMind and Royal Free’s partnership, discuss the future priorities of the health initiative, and generate excitement for the possibilities Streams and their other ongoing research projects present. Among the speakers at the forum was Graham Silk of Empower: Data4Health, an advocacy group to support data-sharing for healthcare and medical research. Silk, a leukemia survivor who personally benefitted from experimental treatment and research, gave little credence to the looming privacy concerns, stating that, “Millions go on Amazon every day and give away their name, address, bank account details and it is bizarre that they don’t feel the same about health data which has the power to do the most good.”
In addition to the open forum, DeepMind Health has made some changes to their website that are in keeping with their new message of welcoming patient input and fostering collaboration. A “For Patients” tab has been added to its health page, which primarily serves to solicit patient representatives who will provide feedback on the app and help to plan priorities for DeepMind’s future healthcare work. The somewhat anemic FAQ section provides additional information about becoming a patient representative and promises the prospect of payment for those who are interested. Only a single question is devoted to addressing privacy concerns, providing a link on how to opt out of sharing patient information in the answer.
So far, very few patients have exercised their right to opt-out of the agreement. According to BBC News, only 148 patients exercised that right following news of the partnership with DeepMind, but the opt-out procedure may be changing soon. In July–several months after news of DeepMind’s data-sharing agreement broke–the National Data Guardian (NDG) published its recommendations on how to revise the security and consent models for sharing health records, with a consultation and analysis of the public feedback currently underway. In addition to these potential changes, NDG, who works with the Department of Health to ensure the confidentiality of health data, has been in the process of reviewing the agreement with Royal Free, and a formal investigation into whether the agreement upheld the Data Protection Act has been launched by ICO, the UK’s information rights and data privacy organization.
With DeepMind Health’s recent embrace of patient involvement, however, the company appears eager to rebrand data-sharing as a positive experience. Patients who offer up their opinions, beliefs, and experiences can gain obtain more user-friendly products and steer the company’s priorities to align with their own–and DeepMind seems keen to remind them of this. Achieving this goal will not only determine the success of Streams, but DeepMind’s other healthcare projects with Moorfields Eye Hospital and University College London Hospital, as well as having perhaps an even broader impact on AI research.
Companies like DeepMind Health have long been touted as a solution to the problems created by an increasingly connected world overwhelmed with data and information. AI companies can help to solve complex problems and produce lasting change in the healthcare industry with the ability to analyze large amounts of raw data, but only if they are granted access to it. Public concern over data-sharing and increased privacy restrictions could present a very real obstacle to AI advances in the coming decades. As DeepMind seeks to regain public trust and evangelize the benefits of information-sharing, it is absolutely crucial they do the job right.