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What do patients with glaucoma think about personal health records?
Author(s) -
Somner John EA,
Sii Freda,
Bourne Rupert,
Cross Vinette,
Shah Peter
Publication year - 2013
Publication title -
ophthalmic and physiological optics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.147
H-Index - 66
eISSN - 1475-1313
pISSN - 0275-5408
DOI - 10.1111/opo.12084
Subject(s) - viewpoints , focus group , thematic analysis , active listening , medicine , perspective (graphical) , enthusiasm , medical record , medical education , psychology , health care , qualitative research , computer science , social psychology , psychotherapist , art , social science , marketing , artificial intelligence , sociology , economics , business , visual arts , economic growth , radiology
Purpose Putting patients in control of their records is one way of promoting patient centred care and patients with chronic health problems may benefit most from personal health records ( PHR s). Glaucoma management is often complicated by incomplete understanding and poor adherence to treatment, two areas which a PHR may help to address. This study aimed to discover what patients with glaucoma think about PHR s and what type of information a glaucoma PHR should contain. Methods A consultation exercise using a focus group approach involving 71 participants was undertaken to discuss if a PHR would be useful and what it would be like. Narrative data were collected through written notes and an online forum in addition to transcripts of the focus group feedback session and individual interviews. Recordings were transcribed and analysed with simple thematic analysis facilitated by NV ivo software ( www.qsrinternational.com ). Results The consultation exercise indicated enthusiasm for PHR s. Views varied on the best format, some participants strongly favoured electronic records and others preferred a low‐tech, paper based format. A comprehensive dataset of 24 items was developed which highlighted areas which are not covered by existing guidance to developers. A model for how PHR s may be useful as an education tool in clinical practice was devised. Conclusions Asking patients what they thought about a glaucoma PHR raised challenging questions and adds perspective to predominantly clinician led development. Listening and responding to such viewpoints is fundamental to developing more patient centred PHR s which may act both as health record and self‐care educational tool to promote more holistic, efficient glaucoma care.