gms | German Medical Science

Background: People with Parkinson's Disease (PwP) experience unique subsets of a large variety of symptoms, including cognitive, emotional and physical restrictions that worse over time. The medication plans are largely based on subjective (biased) self-reports from PwP during one to two medical assessments per year and, hence, often unfit. In near future, we could collect quantitative and qualitative long-term data through personal devices and sensors. Such data may be presented in Personal and Electronic Health Records (PHR and EHR) and support doctors in tuning medical plans and enhance PwPs' symptom control and quality of life.

Methods: We interviewed two doctors to find out which data, symptoms and assessments are relevant for the diagnosis and treatment of Parkinson's and, hence, potentially of interest for disease-specific PHRs and EHRs. We, furthermore, conducted six participatory design sessions in which PwPs created their own paper-based PHRs and used interviews and questionnaires to find out (a) which data (i.e., symptom-related content), structure and level of detail they want in their PHRs as well as (b) their willingness to share the data with their doctors and family. We analyzed the interviews following a structured content analysis approach.

Results: We contribute an extensive set of potentially relevant Parkinson's specific data for EHRs and PHRs (50 symptoms). The participants chose between three and 18 symptoms (sum=74), depending on which they experience. They chose most frequently vestibular disorder, fatigue, sleep disorder, urinary urgency (n=5) and bradykinesia, muscle stiffness, drowsiness and increased sweating (n=4). They placed the data related to symptoms that are especially troubling, prevalent, important or severe at the top of their PHRs and tended to group related symptoms (n=3). They generally want rather little details to the symptoms (for 73%), particularly for non-physical ones. The participanting PwP assumed they would use their PHRs daily (n=5).

Participants are willing to share most of their data with doctors hoping for enhanced care (88% of symptoms), but would only share 62% of such permanently. Participants are less willing to share data with family members (28% of symptoms, 66% of that permanently) because they want to remain in control or think they may be disturbing or overwhelming to them.

Conclusion: We conclude that PwPs have a high need for PHRs, however. Personalization and customization are highly important for extensive PHRs and EHRs and a quick way to adapt those will need to be found. We reflect on the used methods and argue that they are essential for designing PHRs and EHRs that are usable and acceptable to all users.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.