The role of patients and carers in diffusing a health‐care innovation: A case study of “My Medication Passport”

Abstract 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.


| BACKG ROU N D
Patients, carers and members of the public are increasingly recognized as playing or as having the potential to play an important role in improving health services. This can include leading and developing innovative solutions to problems that matter to them. However, little is known about the roles played by patients, or the mechanisms by which patients can develop and diffuse local innovations in a complex health-care system. Patient developed innovations rarely spread beyond their own personal use.
Oliveira et al 1 suggest that when patients develop innovations, these are mostly used to help themselves, or those they care directly for, but are rarely shared more widely. They surveyed 500 patients who had rare diseases to measure how many had developed innovations to help themselves and/or support their own care. They found that 8% of the total number of patients who responded to the survey had developed innovative solutions for themselves that medical experts evaluated as novel. The majority of the innovations focused on increasing the patient's autonomy and quality of life. Lack of diffusion of patient innovation was due to significant barriers to doing so, including inventors' lack of time, skills and opportunities to develop their innovations, and lack of contact with communities who are likely to use the innovation. One of the conclusions of their study was that patients have the potential to transform health care but for that to happen they need to be supported and their input integrated into health-care delivery.
Denis et al 2 theorize that the dissemination of innovations is not necessarily a linear process which adheres to a plan, and that the process of diffusion can be discerned as an interaction between the innovation with its key characteristics and an adopting system, composed of actors with a set of values, interests and power dependencies. They argued that innovations and networks of supporting actors co-evolve over time, and that the adoption and diffusion process is by nature dynamic. Their insight was that successful innovations tend to be adaptable to new contexts. The key principles that define the purpose and use of the innovation remain constant, regardless of context and type of user, and this, Denis et al 2 conceptualized as the "hard core" of the innovation. Part of the reason for success is the adaptability of the innovation to new contexts, and this they conceptualized as the use of the innovation at the "soft periphery." Diffusion of innovation theory is now used across many disciplines and is generally traced to the 1950s and 1960s in the early work of Rogers. 3, 4 Rogers' later revisions of that early work presented refinements to the definition(s) linked to the concept of communication and its role in diffusing innovations. 4 He posited the view that communication which drives diffusion is not linear, and that a more helpful concept was that of convergence. Convergence occurs when communication that drives diffusion is characterized by individuals interacting together, sharing information, seeking information about an innovation and the extent to which the innovation meets a need, how, when and where it is tried, and their experience of it. This is referred to as communication among diffusion networks with information about the innovation sought from "near peers." 5 Greenhalgh et al 5  Patients as innovators in NHS or other health-care settings are written about in policy, empirical and theoretical studies. Insights into patient roles in relation to developing, disseminating or diffusing innovations are rarely mentioned. Instead, the focus is on how patients can be, or are involved in health-care planning, delivery, evaluation and research. Evidence of patients and carers influencing and successfully co-producing service improvement is increasingly studied. Authors have noted that co-production can enhance patient and clinician experience and patient and service outcomes, even though patients' experience and expertise are often not used to the fullest. [6][7][8][9][10][11] The positive impact that patient engagement and involvement in health care can have on outcomes, including improving patients' understanding of their health conditions, how these can be treated and managed, self-management and peer-to-peer learning, is noted in empirical and policy-focused studies. 12,13 Patients are increasingly taking on roles in setting research agendas, including suggesting research questions, becoming part of a research team was important. Principles described in this study are relevant to progressing other patient-led ideas for innovative changes relating to health service development.

K E Y W O R D S
case study, co-production, diffusion, health care, infrastructure support, innovation, patient's roles, self-care and evaluating outcomes. [14][15][16] Commentators, however, suggest that the potential for patients to participate in research continues to be underutilized. [17][18][19] Patients' participation in self-care and their potential to play important roles in enhancing the learning of their doctors is thought to be driving a scientific paradigm change in which the patient's voice is central to an emerging era of participatory medicine. 20 In addition, guidelines for how, when and why to involve patients are increasingly published by patient-led, third sector groups and used in NHS settings. 21,22 This literature provides a lens through which we can understand the landscape in which patients have played important roles.
Sheard et al 23 considered the characteristics of award-winning individuals working in health care who had been recognized as innovators influencing change in NHS settings. From interviews with 15 of them, four key themes emerged as significant: personal determination, the ability to broker relationships, navigating organizational culture to good advantage and the ability to use evidence to influence others. Barnett et al 24 considered innovators' experiences of barriers and facilitators in implementation and diffusion of innovations and found that innovators themselves often go on to be important champions who are willing to lead efforts to achieve diffusion, and they drew attention to the significant influence of inter-personal and inter-organizational networks, the inner and outer context, and the evidence base for success.

My Medication Passport (MMP) is an innovation developed by
and for patients and carers. Available as a hand-held passport sized booklet, or as an app, it is used to record medicines taken, medication aids, allergies and changes to medicines. It can be used to record information about illnesses, vaccinations, hospital or GP appointments and screenings, who to contact in an emergency and anything else the user wishes to note.
Initially, the MMP innovation was used to support a service improvement project. The prototype for it came from a carer who had used a handwritten document previously. This was built-on and co-developed by patients, pharmacists and other health-care professionals. It focused on prescribing and medicines review for elderly patients seen in acute care settings in five hospitals in Northwest London. It was initially intended to support patients when they were discharged from hospital. Transitions of care, for example when someone is discharged from hospital to community, pose risks for patients and can cause adverse events related to miscommunication and inadequate record sharing. 25 There was no one comprehensive, universally available electronic patient health-care record. 26 Changes to medicines reviewed in hospitals were often not known about by GPs or community pharmacists and this caused confusion. 27 An evaluation of MMP use demonstrated that it worked well as an aide-memoire and to improve communication between patients, carers, doctors, pharmacists and other health-care professionals. Subsequently, MMP was used by other types of user. 27,28 In 2013, the MMP innovation was launched outside the initial

| DE S I G N
Using a case study approach 33 , we conducted a mixed-methods evaluation: quantitative analysis of an electronic database used to store data relating to orders received by the provider of the MMP innovation; and qualitative analysis of documents linked to patient/ carer roles in diffusion of MMP.
This study was approved by the Health Research Authority (IRAS 188851). We had explicit permission from those quoted in the Results section of the study to use those quotations. People who placed orders shared the following information: name; occupation; email; address; post-code. When they placed their order, they indicated their willingness yes, or no, to being contacted again for research purposes.

| Data collection
We accessed a database used to record how many orders for the MMP innovation were fulfilled, where in the country those orders were sent, and who they were sent to. Between 5 April 2013 and 31 September 2017, 164 000 were ordered.
We accessed n = 51 documents. These were related to the diffusion of the innovation after it had been developed, tested and implemented on five health-care sites in Northwest London. See Table 1.

| Data analysis
From the electronic order database, we analysed how many MMPs were ordered and the extent of diffusion from 5 April 2013 to 30 September 2017. An analysis of the database using an Excel spreadsheet enabled us to understand who had ordered the innovation, their occupation and where in the UK they were based. The database was analysed using geographical information system software, and post-code analysis conducted, which was mapped to a visual output (Figures 2 and 3).  Table 2, types of events they coproduced in Table 3, and audiences who attended the events in Table 4.
We purposively identified three tracer cases which we pres-

| Limitations
This study had four key limitations. First, it was impossible to collect comprehensive data about all the roles played by all the patients and health-care professionals involved in the diffusion process. The study focuses mostly on patient's and carer's roles because there TA B L E 1 Documents and other sources accessed

Type of document Number
Records of steering group meetings to make MMP available nationally 12

Grey literature/newsletters containing articles about MMP 11
Presentations used in awareness-raising events and workshops 9 Posters shown at conferences 6 Vignettes showing records of how MMP was used/diffused-collected from records including email correspondence, websites, firsthand reports by users 3 Peer-reviewed publications about the early use and evaluation of MMP 3 Planning documents relating to making MMP available outside of its original use in Northwest London 2 Plan about how to make MMP available nationally 2 Record of communication events, which included monitoring notes written by patients and health-care professionals (detailing 74 outreach activities) 1 plan

| Geographical spread and diffusion of the MMP innovation
The timeline presented in Figure 1 starts with the development of the MMP innovation which was initially part of a service improvement project in Northwest London. The timeline shows the trajectory of progress to diffusion. Other occupations of those placing orders were categorized: administrative worker; care centre worker; charity, community interest or third sector worker; clinician (secondary care); GP or primary care practice staff; health-care assistant; health service commissioning and related occupations; nurse; occupational therapist; physiotherapist; research.

| Launch of MMP outside Northwest London
During 2012-13, a steering group convened to "develop and implement a strategy for the roll-out of 'My Medication Passport'

| Professional networks
A key principle of the steering group's strategic communication plan was to raise awareness of MMP and encourage community and hospital-based pharmacists to support it. Pharmacists who were members of the steering group were based in hospitals in Northwest London. They were able to use established hospital-based networks to further disseminate the MMP.
However, they had to establish contact with community-based networks. Action taken was multifaceted. Pharmacists and patients worked together to co-produce posters which were presented at in a variety of settings, in hospitals, local and national conferences and meetings. Pharmacists, carers and patients co-created training materials containing advice on how MMP could be used. These were used in workshops and appeared on websites and in newsletters. 35 The content of face-to-face training was co-developed and delivered by pharmacists and patients. Patients volunteered in high street chemists, raising awareness about MMP. New relationships were built between pharmacists who were members of the steering group and other pharmacists, and between patients and pharmacists, and advocacy opportunities taken advantage of. Orders for MMP started to be placed. Figure 2 demonstrates the growth in orders placed for MMP in Northwest London from 2013. Figure 3 shows the growth in orders across the UK, and that the largest number of orders was placed by pharmacists.

| Role of a carer: linking to new networks
A member of the steering group, a carer, who is a co-author of this paper, had the unique experience of caring for her son who had learning disabilities. He took multiple medicines and experienced fits related to his health condition. Her experience was that MMP had been useful to her and her son outside, as well as in health-care settings. Their experience was that people who live with learning disabilities and who take multiple medicines can be "stopped and searched" for exhibiting unusual behaviour. This might be due to a health condition or medicine, and this could be misunderstood. Their experience of living with learning disabilities had brought them into close working contact with people who had mental health issues and who were sometimes homeless. As part of the steering group, she brokered the first of several meetings with the police force about MMP, and those meetings were attended by herself, her son and other steering group members.
The aim was to introduce the police force to MMP and encourage their recognition of behaviour and medicines often related to people who have learning disabilities or mental health needs and/ or who were homeless. A series of training workshops were agreed and delivered. Orders can be traced from these contacts and are mapped as part of those placed by non-health services as shown in Figure 3. In planning how best to support patients in the local area, the PPG considered patients they realized might benefit most from using the innovation and planned some outreach activities de-

| Vignette 2. Advocates for patients who live with learning disabilities
This vignette is based on publications highlighting the role and experiences that one person who described himself as "carer, parent, patient and health-care professional (pharmacist)" and the influence he had on others. He was an advocate for the use of the innovation and he published a case study about his own use of MMP to support the care of his son who has multiple disabilities including a learning disability. 27 By publishing the case study and outlining the context in which the innovation was useful and through the publication of an additional article written for a broader audience with learning disabilities, 36   A further example of the MMP innovation diffusion occurred between a hospital and patients who participated in a local PPG.

| Vignette 3. Promotion of MMP across social and professional networks
Patients and carers used the innovation in the community. They discussed its potential to be of use to patients who used the local hospital pharmacy. That pharmacy went on to regularly order the innovation and to offer it to patients who took multiple medicines.
A health service network of staff and patients, and a community interest company that supports the diffusion of good practice relating to prescribing and supported NHS commissioners highlighted the MMP innovation in publicity and on their websites. They advocated the use of the innovation by patients, pharmacists and other prescribers to aid good practice. 39 navigating organizational culture to good advantage; and the ability to use evidence to influence others. 23 They used their inter-personal and inter-organizational networks, with some of the original innovators going on to become champions and leading efforts to achieve diffusion, for example within the police and prison service, in third sector organizations such as the sports club mentioned in vignette 3, and via ethnic minority health networks, community-based groups as well as in libraries. 24 The roles that patients and carers played, and their personal qualities were not unique to them. However, we draw attention to this because the roles and qualities are under-recog- The need for this support has been noted previously. 29 There are three main lessons from this study which may be useful for others interested in supporting patient roles to diffuse innovations. Firstly, we identify that patient's and carer's who are innovators, as well as those who are users of and advocates for an innovation, can act as effective leaders in disseminating and diffusing the innovation. Secondly, leadership qualities in patients and carers can be effectively utilized and nurtured when key gatekeepers (eg health-care professionals) holding professional, financial and/or political power fully support co-production and value patient and carer experience and knowledge. Thirdly, co-producing a communications strategy can shape and validate roles for patients, carers and others to reach specific audiences. All of the above is more likely to succeed if the innovation has been evaluated before attempts to widely disseminate it and if the evaluation has demonstrated the acceptance of the innovation in practice by the intended users and audiences.
These lessons are relevant to progressing other patient-led ideas for innovative changes in relationship to health services and patient priorities in the UK and beyond.

ACK N OWLED G EM ENTS
The Along with Margaret Turley, a co-author of this paper, and other early users of the innovation, a vision for its diffusion was shared, tested, reshaped, developed and utilized by multiple others, as this paper shows. We would also like to thank Barry Jubraj for his useful comments on an early draft of this paper and Neil Stillman for his help with references and for a careful reading of the paper before submission.

CO N FLI C T O F I NTE R E S T
No known conflicts of interest.