What do patients with glaucoma think about personal health records?

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 (PHRs). 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 PHRs and what type of information a glaucoma PHR should contain. 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 NVivo software (www.qsrinternational.com). The consultation exercise indicated enthusiasm for PHRs. 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 PHRs may be useful as an education tool in clinical practice was devised. 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 PHRs which may act both as health record and self-care educational tool to promote more holistic, efficient glaucoma care.