Hopes and Fears About Sharing Medical Data

Study: More than 2,000 rare disease patients say they’re willing to share personal medical data to spur innovation, but they want to set ground rules about privacy.

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Patient at a doctor's appointment

Who owns your data?

People are asking that question more pointedly than ever before. There’s Amazon, Facebook and the question of “surveillance capitalism.” But if you’re a person who has a rare disease, there’s another rich vein of data to be mined: patient medical data that could unlock breakthroughs. The rare disease community wants to ensure that data is collected in the right way to bring about scientific innovations while also protecting the privacy of the people who share it.

To learn more about data privacy concerns, EURORDIS Rare Diseases Europe conducted a large-scale quantitative study surveying 2,013 patients in 66 countries representing 664 rare diseases. Data collection presents an historic opportunity for upwards of 300 million people who have one of approximately 7,000 known rare diseases – most of which lack approved treatments. If patients who share the same rare disease put their data together, it could add up to an insight that unlocks a new avenue of treatment.

The EURORDIS study found that nearly all respondents were willing to share their patient data to improve the understanding of their disease, improve diagnosis and increase treatment options. The topic grew more complicated regarding questions about how much control patients want to have over that data.

Half of the respondents worry about unauthorized third parties getting their data. About 1,000 patients surveyed (47%) said they are concerned that an organization could use their data in a context different from the purpose for which it was originally collected. About a third worry their collected data could lead to discrimination, for instance, with a prospective employer. Patients also want to be kept informed about the projects they’ve given their data to, the study found.

“The key is to create a way to ensure there is transparency and the patient has control over who sees their data and how it is being used,” said Deirdre BeVard, CSL Behring’s Senior Vice President for Research and Development Strategic Operations. “There is a broad and global concern around personal data of all kinds. It is particularly sensitive with respect to health data and we must respect that. Across the industry we need to work collectively to build and maintain trust with patients.”

We asked BeVard, who leads the company’s Patient Focus initiative, about the EURORDIS research and how it illuminates patient concerns.

How do you see this conversation evolving to balance the need for patient privacy with the need for data to spur innovation?

I think the conversation around data sharing will only grow stronger and the balance of protecting one’s privacy and sharing for a greater purpose will continue to be a challenge. With that said, you see from the work done by EURORDIS, and many other surveys, that there is a strong willingness on the part of patients to share their data, especially if it could lead to better treatments for them and patients like them. 

I read an interview with Dr. David Fajgenbaum from a live session held during the J.P. Morgan Healthcare Conference. His story of being diagnosed with Castleman Disease and making it his mission to search for a treatment is inspiring. He talks about how the patients were integral to his research. Their samples and data were “kind of held hostage” by their treating physician. Having the patients allow researchers to access the data and samples was key to advancing the work they were doing. Had that not happened, their efforts would have stalled. 

He also speaks about collaboration among physicians and healthcare providers to share their experiences and ideas for how to treat these rare diseases and how to advance new research ideas. Patient groups may do this on their own, with the health care community, with industry or all of the above. It’s exciting and empowering to consider how responsible and respectful data sharing can advance medical research. It is how collaboration can turn hope for a treatment into action to find one.

One issue is that different countries have different rules. Any thoughts on that challenge?

It’s a reality we must navigate. We need to ensure that it does not become an excuse or a barrier to act.

The COVID-19 pandemic put a new lens on this discussion because of contact tracing, telemedicine and other technologies. How do you think this global health crisis will affect views on patient data privacy?

This is a really big question and it further highlights data privacy and security concerns. Some of those concerns are the same ones we face every day; things such as who owns the data? How will it be used? Can it be collected legally and securely? Is it for a legitimate purpose? With contact tracing, you now layer on the tension between individual privacy rights and the protection of public health. Views on that balance differ based by country and culture. Where technology has existed and is now being leveraged, I think the concerns are not as significant. For example, telemedicine existed but perhaps was not as widely used in some healthcare environments and in clinical research. So overall I think the pandemic has heightened the awareness about data security and it has had very broad impact.

What makes you hopeful about the future of data-sharing?

I am hopeful because I think we have only begun to scratch the surface of what is possible. How can you be anything but hopeful when there are so many brilliant minds and passionate people focused on advancing better diagnostics, therapies and healthcare solutions? There’s a passion and an energy being shared amongst patients, researchers, healthcare providers, tech developers, etc. that is palpable. We all need to keep making connections, keep sharing information and keep the patients as partners in what we do.