People With Sickle Cell Disease Willing to Share Data as Partners, Not “Specimens”

The results of a new focus group offer insights on how and when people with rare diseases are willing to share their personal health information.

People with sickle cell disease (SCD) are willing to share their health data to help advance public and scientific knowledge about their disease, but they are less willing to do so when they are not given clear information about why the data are being collected and how it will be used, a new report shows.

The authors of the study, published in Journal of Patient-Centered Research and Reviews, said the data show that people with SCD are not “passive” providers of health data, but rather sophisticated managers of their health conditions and data.

They said access to data about patients with rare diseases is critical because only about 5% of rare diseases have an approved treatment. However, accessing sufficient data is inherently challenging since rare diseases have small patient populations.

“Therefore, involving patients (and patient advocacy groups that often coordinate the large-scale collaboration of patients) as equal partners in the discovery, development, and approval of pharmacological treatments as early as possible can provide a more accurate picture of what it is like to live with a specific condition and represents a 21st-century approach to addressing the challenge of slow approval of rare disease treatments,” they wrote.

To better involve patients, the investigators said it is important to better understand the reasons why they are willing or unwilling to share their health data. To find out those reasons, they created a focus group of people in the United Kingdom with SCD. The 25 participants were all older than 18 years and were contacted with the help of a patient advocacy group. The focus group was conducted online using a video-conferencing program.

The investigators identified several factors that tended to motivate people to share their health data. Patients were more likely to share data if they believed it would raise awareness of the disease, help others, and have a clear impact. They were also motivated to share their data when given financial incentives and when they felt they were treated as subject-matter experts with lived experience, rather than as “specimens to be studied.”

The patients also said they were more likely to share data when they were provided anonymity and given a clear responsive method by which to withdraw consent.

“Importantly, underpinning many of the barriers and enablers identified was the importance of voice and choice in what, how, and when data are both shared and withdrawn,” the authors wrote.

On the other end of the spectrum, patients expressed reticence about sharing data when they were not clearly told why that data was being sought and who would benefit from it being shared. For instance, one participant said they were concerned that turning their data over to researchers might lead to that data being sold to third parties.

“This theme was often linked to feelings of mistrust toward the health care system and society in general, with respondents highlighting that such data may be ‘used against’ them in the future, for example, by health insurance companies,” the investigators said.

Participants also tended to view their electronic health record and genetic data as extensive and detailed, and therefore were more sensitive about sharing it. However, they were more willing to share information about experiences, mindset, and well-being since they considered those measures to be more indicative of their real-world experiences of living with SCD.

In conclusion, the study authors said the focus group showed participants were eager to contribute to scientific understanding of their disease, but their willingness to provide data was closely linked to the degree of agency they felt. The investigators said these findings should provide meaningful insights for scientists investigating not just SCD, but all rare diseases.

“Under the right conditions, participants were prepared to share their health data and experiences in a more systematic and frequent manner,” the authors concluded, “but crucial to this, was reframing patients not just as experts in their condition but as high-value managers of their health care data who decide what they share and when they share it.”


Baines R, Stevens S, Garba-Sani Z, Chatterjee A, Austin D, Leigh S. Attitudes toward personal health data sharing among people living with sickle cell disorder, exemplar for study of rare disease populations. J Patient Cent Res Rev. 2023;10(2):68-76. doi:10.17294/2330-0698.2006

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