Rare disease patients should be considered ‘high-value managers’ of their condition

Utilizing patient experience data obtained under real-world conditions is key to painting the most accurate picture of needs and understanding how sickle cell disorder (SCD), and other rare diseases, impact patients’ day-to-day lives, according to a study.

“To appreciate the value that patient perspectives bring, we must revisit this status quo, amending our approach to patient centricity and reframing patients as high-value managers of their condition and personal health data who crucially decide what, how, and when they share it,” the study authors wrote.

The study involved a single online focus group of 25 participants living with SCD. Their discussions were transcribed verbatim and analyzed using inductive thematic analysis.

The study identified 5 primary motivators for sharing health data: improving awareness, helping others, evidencing impact, financial incentives, and being recognized as “experts with lived experience” rather than “specimens to be studied.” However, participants also highlighted barriers to sharing data, including a lack of clarity regarding “why” data was sought and “who” benefited.

Participants noted that electronic health records (EHR) and genetic data were often “too detailed” and therefore “off limits” for sharing. However, experiences, mindset, and well-being data, which are often hidden from the EHR, were acceptable to share and were considered a better barometer of how rare conditions treat patients day-to-day.

Reference
Baines R, Stevens S, Garba-Sani Z, et al. 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. PMID: 37091117; PMCID: PMC10117534.