The role of patients and carers in diffusing a health-care innovation: A case study of "My Medication Passport".

BACKGROUND: Patients are increasingly recognized as playing important roles in improving health services. Little is known about the mechanisms by which patients develop and diffuse local innovations in a complex health-care system. OBJECTIVE: To ascertain how diffusion of an innovation, My Medication Passport, occurred and roles played by patients in it. DESIGN: Case study: quantitative mapping of innovation's diffusion and analysis of the routes and occupations of those through whom the innovation spread; documentary analysis; reflective assessment of patient's roles. SETTING AND PARTICIPANTS: NHS Trusts, third sector organizations, patients and health-care professionals. INTERVENTIONS STUDIED: Co-produced action to raise awareness and influence use of the innovation; order database which enabled ease of access to the innovation. MAIN OUTCOME MEASURES: Geographical spread of innovation; occupations of individuals; types of organizations using the innovation. RESULTS: The innovation spread from initial development and use in Northwest London across the UK and beyond. Key roles played by patients were as follows: co-producer; advocate; relationship builder; relationship broker; planner; presenter; awareness raiser; trainer; networker. Patients identified and introduced potential audiences and users to MMP, using social, organizational, sectoral, lay and professional networks to do so. They organized a range of awareness-raising and communication activities, monitored feedback, evaluated the impact and responded to new interest. DISCUSSION AND CONCLUSIONS: The roles of patients in diffusing innovations are under-recognized. Collaborative working between patients, carers and health-care professionals in planning and progressing the use and supporting diffusion of the innovation was important. Principles described in this study are relevant to progressing other patient-led ideas for innovative changes relating to health service development.

Use of patient-held information about medication (PHIMed) to support medicines optimisation: protocol for a mixed-methods descriptive study.

INTRODUCTION: Risks of poor information transfer across health settings are well documented, particularly for medication. There is also increasing awareness of the importance of greater patient activation. Patients may use various types of patient-held information about medication (PHIMed) to facilitate medication transfer, which may be paper or electronic. However, it is not known how PHIMed should best be used, whether it improves patient outcomes, nor is its key 'active ingredients' known. Discussion with patients and carers has highlighted this as a priority for research. We aim to identify how PHIMed is used in practice, barriers and facilitators to its use and key features of PHIMed that support medicines optimisation in practice. METHODS AND ANALYSIS: This study will take place in Greater London, England. We will include patients with long-term conditions, carers and healthcare professionals. The study has four work packages (WPs). WP1 involves qualitative interviews with healthcare professionals (n=16) and focus groups with patients and carers (n=20), including users and non-users of PHIMed, to study perceptions around its role, key features, barriers and facilitators, and any unintended consequences. WP2 will involve documentary analysis of how PHIMed is used, what is documented and read, and by whom, in a stratified sample of 60 PHIMed users. In WP3, we will carry out a descriptive analysis of PHIMed tools used/available, both electronic and paper, and categorise their design and key features based on those identified in WP1/2. Finally, in WP4, findings from WPs 1-3 will be integrated and analysed using distributed cognition as a theoretical framework to explore how information is recorded, transformed and propagated among different people and artefacts. ETHICS AND DISSEMINATION: The study has National Health Service ethics approval. It will provide initial recommendations around the present use of PHIMed to optimise patient care for patients, carers and healthcare professionals.