consumer-generated health data- and sharing them with a physician empowers and reassures healthcare consumers, as well as strengthens the doctor-patient relationships, according to a new study.

Consumer-generated health data-using a mobile app or wearable device-generally has been researched from the perspective of the clinician. However, a new two-part study, 

 (QUT) in Brisbane, Australia, study 1 used interviews with 30 patients, caregivers, and doctors to understand attitudes about data collection and use. Study 2 was a pilot trial with caregivers (parents) of children undergoing laparoscopic appendectomy at the Queensland Children's Hospital. For 10 days caregivers generated and emailed surgical site photographs to the children’s hospital. Subsequently, caregivers were interviewed about the engagement framework. In total, 60 interviews were analyzed using theme and content analysis.

“It was found the data can promote patient engagement, specifically helping patients with the emotions associated with the healthcare journey,” says former medical photographer Kara Burns, QUT Business School, Queensland University of Technology, who conducted the research as part of her PhD through the QUT Business School. “Collection and use of data increases consumers sense of reassurance, improves communication with providers and promotes greater personal responsibility, indicating an empowering consumer process. Lastly, it can also improve confidence and satisfaction in the service.”

Patient Control Over Health Data: Experts React

Data also can improve confidence and satisfaction in the service and extends the relationship between healthcare providers and patients beyond the walls of the healthcare facility, Burns says. “If you fail to recognise a patient’s desire for ‘supported autonomy’ (i.e., autonomy in data collection, support in diagnosis), some patients will switch providers to find a more patient-centric service.”

Patients are much more likely to self-diagnose using consumer-generated data when the doctor was not available and when they have a peer network, so ‘prescribing’ data collection may reduce instances of self-diagnosis, according to Burns. “Information systems must be planned with the capacity to incorporate patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), and patient-generated health data,” she says.

“While patients and carers wholeheartedly supported data use, one clinician refused to see the data at all,” Burns says. “This confirms other findings that a small percentage of healthcare practitioners will not be interested in consumer-generated health data and may miss the opportunity to improve the therapeutic relationship. Importantly this paper confirms and explains why empowerment occurs, suggesting it is an experience of self-advocacy, self-confidence, health system control, and health situation control and more than just ‘being part of the team.’”

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Results from an Australian study indicate sharing medical data improves the patient-provider relationship.