Setting/Overview of the ePHR
Before developing the ePHR, the research team conducted short interviews with 121 patients (100 of whom had experience of psychosis) within South London . Findings suggested that older adults with psychosis wanted to improve their computer literacy, that people from black, minority and ethnic groups may need extra support when engaging with online health-related information, and that mobile phones and computers were the most familiar devices for accessing the Internet.
The website was developed within South London and Maudsley NHS Foundation Trust (SLaM). This covers a large, ethnically diverse population. Patients were referred to myhealthlocker by clinicians, either after exiting inpatient wards or through community services. Patients were invited to attend a facilitated ‘drop-in’ session at a local community venue, led by an Occupational Therapist. The purpose of these sessions was to enable patients to access the Internet, teach basic computer skills and introduce them to the features of the ePHR. Patients who attended drop-ins but who had no other way of accessing the Internet were lent mobile devices.
The myhealthlocker ePHR allows patients to monitor health-related outcomes and complete PROMs. These data are sent automatically to the clinical record, where they can be read both by patients and their clinicians.
This was a mixed methods longitudinal study to ascertain how people with SMI might use an ePHR. We defined whether or not they had used the ePHR based on the definition of completion of a self-monitoring outcome measure plus logging into the ePHR on two separate occasions. Using a mixture of community and inpatient settings, data were derived from three sources (1) self-report questionnaires, (2) auditing participants’ usage of the ePHR and (3) participants’ completion of PROMs. Data were supplemented by interviews with a smaller sample of patients who had used myhealthlocker. Participants were not obliged to allow research access to their medical record, therefore provided only anonymised data.
Participants were recruited from community outpatient services (for people with psychosis) and from inpatient ‘triage’ units across South London. Care-coordinators within community services referred people into the programme. Link-workers within inpatient units would signpost participants to the external drop-in sessions, all participants recruited via this route were soon to be discharged from the ward. Interviews were conducted with ten patients.
Login statistics were mapped for all individual users, with the date of each login and whether this was made ‘dependently’ (i.e., as part of a facilitated drop-in session) or ‘independently’ (outside of these hours).
‘Participants were asked to complete the Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). This has been validated for measuring....Etc’
It has been validated for measuring mental wellbeing in people aged 16 years and over in the UK, and has proved popular with practitioners, policy-makers and service-users .
Feasibility and acceptability
A 17-item feasibility questionnaire about the experience of setting-up an account and using the site, PROMs completion and views on the speed, design, and layout of the site. The survey was predominantly quantitative, including yes/no and 5-point Likert scales, but there was one open-ended question on how the site could be improved. Some participants wrote additional comments on the questionnaire form. The questionnaire included one item on patients’ computer confidence prior to using myhealthlocker to provide some context for the answers.
Qualitative interviews were conducted using a topic guide, developed in partnership with the myhealthlocker team. The topic guide included questions on whether the ePHR had been useful, what patients most liked about the site, whether they would recommend the site to others, whether they had shared the results of their health monitoring with their clinician(s), concerns about confidentiality, and what could be improved.
Demographic information was collected on participants’ age, ethnicity and history of service usage. Diagnostic information was extracted through participants’ clinical records (in cases where the participant had provided informed consent for the researcher to do this).
The project team gained approval from an independent Research Ethics Committee (NRES Committee London - Camden & Islington, Reference 10/H0722/79). Participants were given personal login information to access myhealthlocker. After completing at least one WEMWBS, participants were asked to complete the feasibility survey and a sub-sample participated in face-to-face qualitative interviews after they had been using with the site for a prolonged period, typically three months. The period of data collection was 28/02/2013 to 11/07/2014.
Definitions of usage
We defined a person having ‘used’ myhealthlocker as logging in at least twice and completing at least one WEMWBS survey. The completion of a WEMWBS survey indicated that patients had used the self-monitoring function of the site and were able to provide feedback on it. This is a stringent criterion as many individuals may have only wanted to browse the online services; information on medication, health conditions and disability benefits.
Patterns of usage were explored to identify instances of ‘dependent usage’. These were coded as occurring within the drop-in session, 10 min before or 30 min afterwards. Using the site outside these parameters was coded as ‘independent’. Participant attendance at drop-ins each week was corroborated using attendance registers. Separate logins within two hours of each other were conflated in order to account for unintentional logouts or for multiple logins in a short space of time. Two researchers independently classified each login as ‘dependent’ or ‘independent’ and discussed any disagreements.
No formal sample size calculation was conducted; we recruited participants as they were referred from local services to use myhealthlocker. The aim was to recruit at least 50 individuals and monitor their usage over a 12 month time period.
Participants’ usage with the site was measured as the primary outcome. For those who used the ePHR, we analysed participant feedback using descriptive statistics. Secondary analyses focused on the factors that may relate to usage using two-sided chi-squared tests. Qualitative data from the questionnaire and interviews were analysed using constant comparison. Two researchers devised a coding frame, and then analysed the data in accordance with this frame. Initially the coding frame was based upon the topic guide, but this was revised whilst coding the data to account for new themes arising. The second iteration of the coding frame was agreed by the coders after analysing half of the interviews. The coding frame was then revised following analysis of all ten interviews. The main themes were agreed between the two coders (DR, MM). A similar mixed methods analysis strategy has been used in other studies which have investigated website and app usage in the health field .