The value of medical data is something I’ve touched upon numerous times over the past few years, both in terms of better treatment of patients, but also the development of new treatments that can help to keep us healthy.

There has been a growing appreciation of the value of this health data among healthcare organizations, and some have already begun selling access to their data to organizations.  It’s a process that is largely permitted by the law, providing the data is anonymized.

With the Covid-19 pandemic in full flight, the resources of healthcare providers have been stretched to their limits, thus tempting many to cash in on the patient data they have.  A new study from the University of Michigan explores how they might do this in an ethical and responsible way.

Responsible data sharing

“We believe our approach provides an ethical way to advance medical discovery and innovation while also respecting the trust patients and research participants put in the University of Michigan,” the researchers say.

The heart of their framework is an informed consent document that’s designed to be easy to understand for research participants.  The form is used in any research projects undertaken by the university, and focuses on sharing their information, and the samples from them, outside the university.

The critical passage in the form reads: “You give permission to share your samples and information with researchers around the world including those working for companies. Researchers and their organizations may potentially benefit from the sale of the data or discoveries. You will not have rights to these discoveries or any proceeds from them.”

The study revealed that around half of research participants agreed to this consent when asked, which then allows their data to be used, in an ethical way, by various other organizations.  If their data is used by a specific company, the participant is notified, but they cannot withhold their consent at that time, although they might be able to in future.

If no consent is given, then their data is tagged as off-limits for sharing with external organizations, although it can still be used by the university for academic research.  The whole project sits under the remit of an ethics committee that are tasked with reviewing, approving, and tracking any projects involving patient data with external groups.

Medical consent

The paper highlights past research, which shows that people are often willing for any data generated by the research they participate in to be used to help others with the same condition they have.

While there’s no physical risk involved in sharing one’s medical data, there is a risk associated with the data being de-anonymized, which has been proven to be easier to achieve than previously thought.

“The temptation has never been greater to take shortcuts around health data protections to vie for huge federal grants or to develop and monetize intellectual property,” the researchers explain. “That is why we have adopted our approach, and we hope it will serve as an example for others.”

Of course, in the UK, it’s possible that your health data is being used to tackle covid-19 without your consent, as explained by the NHS Digital team.  Data being used may include your medical records or anything collected by healthcare providers in relation to your care. Researchers in universities, government and also private companies are using it to scrutinize the way the virus is transmitted, how the disease progresses, and to help analyse which treatment options are most effective.

It seems more likely that the crisis will provide cover for huge over-reach in terms of the use and distribution of health data for which no consent has been granted.  The value of this is clear, but without consent and control, it’s surely a practice that cannot be condoned.