ORCID

Abstract

Background: Advancements in digital health technologies (DHTs) mean people are increasingly recording and managing personal health data. As observed during the COVID-19 pandemic, sharing of such data may provide unrivalled opportunities in advancing our understanding of conditions otherwise poorly understood, including rare conditions. Methods: A semi-structured focus group (n=25) explored perspectives and experiences of sharing health data among those with a group of rare haematological conditions, sickle cell disorder (SCD). The focus group explored (I) what ‘feeling well’ looks like; (II) how this could be monitored using DHTs; (III) which data healthcare professionals (HCPs) should pay greater attention to and; (IV) types of data willing to be shared, with whom, and under which conditions. Key themes were further assessed via an online survey (n=50). Results: Patient-relevant measures of condition-management focused on “everything else that comes with” SCD, suggesting HCPs did not pay sufficient attention to day-to-day symptom variability. This was juxtaposed against the “fixed and one-off” electronic health record (EHR), collecting pre-specified data at predetermined snapshots of time, not considered reflective of outcomes associated with “feeling well” day-today. Forty-four-point-seven percent of respondents had previously shared health data. Most were willing to share data concerning symptoms and health service utilisation, but were less willing to share genomic and EHR data. Sixty-one-point-seven percent believed HCPs did not pay enough attention to daily fluctuations in mental and physical health. Financial benefits (74.5%), trust in organisations seeking data (72.3%), and knowing how data will be used (61.7%) were key facilitators of data sharing. Seventy-one percent, 70% and 65.2% had not previously shared health data with the pharmaceutical industry, charitable organisations and digital health interventions respectively, but were open to doing so in the future. Conclusions: Those living with the rare condition SCD were supportive of collecting and sharing data to foster research and improve understanding and outcomes. However, specific requirements were identified to respect privacy and informational needs regarding future use of data. DHTs can be a valuable tool in improving understanding of the day-to-day impact of health conditions, but understanding patient needs is critical in ensuring involvement in the process, as not all data types are considered of equal value, benefit, or risk.

Publication Date

2024-01-08

Publication Title

mHealth

Volume

10

Acceptance Date

2023-11-29

Deposit Date

2024-10-22

Funding

Data Sharing Statement: Available at https://mhealth. amegroups.com/article/view/10.21037/mhealth-23-18/dss Peer Review File: Available at https://mhealth.amegroups. com/article/view/10.21037/mhealth-23-18/prf Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://mhealth. amegroups.com/article/view/10.21037/mhealth-23-18/ coif). S.L., R.B. and S.S. report that the research was funded by a small business innovation grant as part of the eHealth Productivity and Innovation in Cornwall and The Isles of Scilly (EPIC) Programme, a European Union Regional Development (ERDF) programme led by the University of Plymouth. S.L. is the co-founder of Prometheus Health Technologies Ltd. R.B. is a partial share owner in Prometheus Health Technologies. Z.G.S. chairs the NHS England Patient Advisory Group for Sickle Cell Transformation and receives a patient involvement honorarium in line with NHS England policy. As part of this role, she is a member of related steering groups, committees and assessment panels; she has also conducted work as a paid consultant, performing research related activities for Prometheus Health Technologies, and is also a member of the Genomics England Diverse Data Advisory Group. The other authors have no conflicts of interest to declare.

Keywords

Data sharing, digital health technologies (DHTs), personal health data, rare disorders, sickle cell disorder (SCD)

First Page

4

Last Page

4

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