Patient empowerment: designing technology that supports people’s coping strategies
Background: Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease.
Objectives: This study set out to investigate patient families' lived experiences of working with a PCEHR.
Method: We conducted a semi-structured qualitative field study with patient families and clinicians at a children's hospital in the UK that uses a PCEHR. All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (for example, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach- to avoidance-oriented, and proposes that patients' information needs depend on their style.
Results: Based on themes that emerged from the data analysis, and informed by prior research on coping styles, we identified three groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach-oriented, highly motivated to use PCEHR), and the three groups as collaborating (approach-oriented, motivated to use PCEHR), cooperating (avoidance-oriented, less motivated to use PCEHR) and avoiding (very avoidance-oriented, not motivated to use PCEHR).
Conclusions: The PCEHR met the needs of controller and collaborators better than the needs of co-operators and avoiders. We draw on Self-Determination Theory (SDT) to propose ways in which PCEHR design might better meet the needs of avoidance-oriented users. Further, we high-light the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, com-prehensibility of data security mechanisms, timely information provision (recognising people's dif-ferent needs), personalisation of use, and easy engagement with clinicians through the PCEHR.