Objective: To evaluate the ability of patients to understand causal relationships between disease symptoms and behaviour presented from synthetic representative cases using the system. Secondary and tertiary aims are to assess usability and identify requirements for improvement of the application before deployment.

Background: People with Parkinson’s Disease (PD) must adhere to medication schedules and some need to adjust their medication to the rapid fluctuations of their motor function. Consequently, disease self-management is essential in PD and this requires high level of patient health literacy and empowerment. The EMPARK project aims to achieve this goal by home monitoring using IoT-based system complemented with self-registration of exercise, meal times and quality of life assessment. From previous evaluations indicate high level of technology acceptance and identified improved anticipated health literacy and empowerment. Before deployment and field tests, further studies are required to understand how patients interpret data presented by the system.

Method: Based on previous work in the patient empowerment domain where empowerment factors such as health literacy is positively associated with use of health information technology, we measure patient understanding of possible causal associations between symptoms and management of the disease. Patients are recruited through the patient associations during spring, 2019. Patients will be represented with synthetic realistic, clinically derived cases of PD scenarios including symptoms and related self-management data. Each case is developed and validated by clinical experts. The understanding of the possible causal associations is qualitatively assessed by semi-structured interviews. In addition, quantitative, questionnaire-based assessment of patient comprehension is performed based on an online video representation of the clinical scenarios. Results of the analyses will be triangulated.

Results: By using simulation of the system, patients will be able to identify causal relationships between symptoms and self-management.

Conclusion: This pre-implementation study will help in understanding the abilities and assumptions of the PD patients when applying the system, and therefore can become a useful method for assessment of the usability and further development of systems for PD patient empowerment.

References: The abstract will also be presented at World Parkinson Congress 2019

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MDS Abstracts - https://www.mdsabstracts.org/abstract/an-internet-of-things-system-for-patient-empowerment-a-case-study-on-measuring-patients-understanding-of-causal-relationships-between-symptoms-and-behaviour/