Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health
By Hanna Schneider, Susan Hill, and Ann Blandford
Journal of Medical Internet Research
Background: Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease.
Objective: This study set out to investigate patient families’ lived experiences of working with a PCEHR.
Methods: We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). 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 (eg, 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: We identified 3 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 3 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 cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight 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, comprehensibility of data security mechanisms, timely information provision (recognizing people’s different needs), personalization of use, and easy engagement with clinicians through the PCEHR.
We are an international experience design consultancy helping companies and organisations to innovate their products, services and processes by putting people and their experiences first.
100&Change is a MacArthur Foundation competition for a $100 million grant to fund a single proposal that will make measurable progress toward solving a significant problem. 100&Change will select a bold proposal that promises real progress toward solving a critical problem of our time. And it will award a $100 million grant to help make […]
Then we are interested in hearing from you. We have several positions available for talented UX/UI and service designers who are passionate about creating world-class user experiences. Please see the job descriptions on our website for more information, and send us your CV with a cover letter statement about yourself, your experience, and what UX […]
Experientia is proud to have been a key participant at the Roche Innovation Summit, held at Roche headquarters in Basel Switzerland on 19 June 2018. Themed “Transforming the Healthcare Experience Together”, the summit aimed to galvanize the Roche community around the future transformation of healthcare and diagnostics. With 800 attendees from Roche and Genentech global […]
Hai una startup? Hai mai pensato ai benefici che potrebbe trarre dal Design Thinking? Questa è l’opportunità per scoprirlo! DesAlps Workshop #2: Il Design Thinking per la tua startup! Giovedì 28 giugno 2018 – dalle 9:30 alle 17:00 @ I3P | Corso Castelfidardo 30/a, Torino —– Nell’ambito del progetto europeo DesAlps, un team di esperti […]
Experientia è lieta di invitare le piccole e medie imprese del territorio piemontese al: DesAlps Workshop #1: Il Design Thinking per le PMI Venerdì 18 maggio 2018 – dalle 9.00 alle 17.30 @ Rinascimenti Sociali | via Maria Vittoria 38, Torino Scopri i vantaggi che il Design Thinking può portare al tuo business per prepararvi […]