The staff, patients and carers who adopt and use a Learning Health System are critical to its success. Previous studies [127] have shown that staff sometimes abandon technology because of usability issues, but more often do so because of threats to their scope of practice, fear of job loss or concerns over the safety/welfare of patients. Patients often abandon technology because of usability and the amount of work required of them. Technology may not be used due to weak social networks or a lack of skills among carers, so these assumptions must be made explicit.
This supported previous analysis that “those on the front line of care (clinicians, staff, patients) navigate change through their small part of the system, adjusting to their local circumstances, and responding to their own interests rather than to top-down instructions” [123].
Digital exclusion is a major concern for patient-facing systems. In the UK, 7% of the population lack internet access, while almost 12 million people do not possess the digital skills considered essential for going online [131]. There are broad government initiatives to improve digital inclusion, but providers who offer digital services must also ensure that patients without the necessary skills or resources are not disadvantaged.
Some individuals have ethical concerns about how their data might be used [19]. Clarity around Information Governance (see above) and the use of participatory co-design (see below) are key to resolving such concerns.
Fewer than one third of GPs used HealthTracker for more than half of eligible patients. This was ascribed to a combination of technical and sociocultural reasons, as well as unwritten clinical assumptions. For example, alerts that appear after the clinician has decided to do something can cause cognitive dissonance.
PatientsLikeMe was eagerly adopted by patients, reaching 750,000 members. As discussed, adoption varied by condition and by age and gender. The stage of illness was also important, with people more likely to sign up at diagnosis or when their condition changed. Patient activation [192] was another important factor. Little effort was made to drive adoption by clinicians; PatientsLikeMe did not employ any senior clinicians.
CYPHP’s Learning Health System adopters include patients, parents, and professionals. The portal was developed from another effective portal and linked to existing EHRs. There have been a number of issues from a professional perspective. For example, it was a challenge to achieve interoperability between primary and secondary care clinical notes, but practical work-around solutions were found, and care effectively crossed boundaries. Concerns about professional liability and accountability within a multi-agency, multidisciplinary system were overcome through developing a partnership with shared governance for the programme, with clinical governance agreed by clinical teams. CYPHP was successfully adopted because it moved from disruption to embedding new ways of working within business-as-usual systems, using a combination of “hearts and minds”, parent power, clinical common sense and effective management.
TRANSFoRm was only adopted by a trial group. It was clinician-facing and was shown to be acceptable to GPs [37].