Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems

BACKGROUND: Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout. METHODS: There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team. RESULTS: Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR. CONCLUSIONS: We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12888-014-0305-9) contains supplementary material, which is available to authorized users.