Patients’ and healthcare professionals’ experiences with a patient-controlled electronic medical record and communication platform (Patients Know Best® (PKB))

Aims: Qualitative evaluation to capture insights and experiences of UK specialist doctors, nurses and people living with HIV (PLWHIV) from using Patients Know Best® (PKB). PKB is an innovative, patient-portal, medical record and communication platform used by over 60 hospitals across seven countries. PKB enables secure messaging between patients and their health care team, patient access to results, tools and functionality to support monitoring, device integration and self-management. Patients control health care professional, carers and other access to their PKB record as needed. In the UK, PKB has been used in 11 specialist HIV centres for up to 2 years.


Methods: Participants were from 7 UK HIV centres that use PKB; 2 with automatic upload of blood results via lab systems integration. Six doctors, 5 nurses and 4 PLWHIV took part in focus groups or individual interviews, which were audio-recorded and transcribed verbatim. Transcripts were systematically coded using a thematic analysis approach.


Results: Participants had on average 1.5-2 years’ experience of using PKB. PKB was mainly used to send/access lab results or for secure messaging between PLWHIV and their specialist health care professionals (HCPs).  Participants reported that PKB improved patient experience by providing a convenient, mobile, secure and discreet method of contacting HCPs, and self-management through better access to and understanding of blood results, greater ability to self-monitor and more proactive communication with HCPs about concerns. PKB also facilitated efficiencies in care through reducing the need for appointments and phone calls, more efficient and informed use of consultation time and increased HCP capacity for complex patients. HCPs suggested lack of IT systems integration and resistance to PKB by some colleagues and PLWHIV were barriers to wider uptake, as were limited PLWHIV engagement and communication via PKB with GPs and clinicians in other departments.


Conclusions: A number of benefits of PKB and areas of value were reported by UK HIV HCPs and PLWHIV, as well as some barriers to wider use. All HCPs supported continued use of PKB, particularly with greater uptake and integration. Findings from this qualitative evaluation identify outcomes for further research and guide future implementation.

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