Over the past 40 years the public’s relationship with health care has progressed in a significant way. In the early 1980s, patient and public involvement (PPI) was jump-started by activists who insisted their voices be heard in the development of HIV treatments. Concurrently, a more holistic, human-centred approach to health was outlined by researchers.Footnote1 This initiated a gradual ripple effect in the perception of patients and caregivers from ”passive consumers” to “educated”, “empowered” stakeholders, and deepened their involvement throughout the health innovation pathway to help identify and deliver the outcomes that matter most to them. The COVID-19 crisis is but the latest example of people around the globe needing to take a more active role in their health, not only to educate themselves about the new virus, but to make choices about self-protection, including chronic disease management and vaccination.
Still, within the past decade, calls for a more active role of patients and the public have continued to emerge worldwide. The European Union has suggested more needs to be done to ensure patients’ and the public’s active role in innovation: “Excellence [.] is about more than ground-breaking discoveries – it includes [.] the co-production of knowledge”.Footnote2 Dr. David Cutler, professor of economics at Harvard University has recognised the potential benefit from enhancing PPI, for health care in particular. “The biggest changes (to health care) are likely to come from reimagining the role of the patient – the single most underused person in health care. Health care will be less frustrating … when patients are more in charge”.Footnote3 Such messages point to an expanded definition of PPI and to a process which is still evolving.
Indeed, a new facet of this paradigm shift is now discernable in health education – one in which patients are not just active learners, but also educators. A case in point is provided by EIT HealthFootnote4 education programmes which are taking the citizen/health care relationship to a significant new level. Where health education was once the sole province of academia and health care professionals, today’s educational offer is developed “with” patients, “for” patients. Such is the case with YEAH (Youngsters Engagement in Health Science)Footnote5and EUPATI (The European Patient’s Academy on Therapeutic Innovation),Footnote6 which educate patients – young people and adults respectively – about the medicines R&D process; REHAB+,Footnote7 which makes cardiac rehabilitation accessible to people having experienced a heart attack; ACTIVEHIP (Activating older people after a hip fracture)Footnote8 which offers a person-centred, at home tele-rehabilitation and educational programme for people with a hip fracture; and SAFE (Superbug Awareness For Education)Footnote9 which empowers young students as research agents for the discovery of novel antibiotic treatments.
This paradigm shift is not just visible in discourse but also materialising in real-world examples: results from a pilot study of ACTIVEHIP that compared tele-rehabilitation (supported by caregivers) with the traditional home-based rehabilitation (provided by health providers) by adults suffering from a hip fracture showed that even with low adherence to the full ACTIVEHIP protocol, patients obtained a an impressive functional recovery – 96.8% of their previous pre-fracture Functional Independence Measure (FIM), an increase of their quality of life and an improvement of psychological factors.Footnote10 The ACTIVEHIP protocol had better results in self-reported functional independence and physical condition than traditional home-based rehabilitation. Another instance can be found in the EUPATI Fellows/Alumni Surveys: an increase in leadership roles in patient organisations from 58% to 72%; increase in advisory roles to pharmaceutical companies from 22% to 59%; increase in advisory roles to regulatory agencies from 14% to 51%; and increase in advisory roles to reimbursement/HTA bodies from 5% to 14%.Footnote11
The success of these programmes is dependent on the willingness of various stakeholders, including healthcare professionals, researchers, manufacturers, regulators and others to learn from citizens and patients, resulting in a holistic, revolutionary kind of approach to health care. Indeed, programme leaders are using terms such as “experts”, “collaborators”, “advisors” and “vital team members”, to describe the central role the public and patients play in these projects. To appreciate the progressive nature of this approach, consider two such programmes whose very success is dependent on the expertise of the people they ultimately wish to serve.
SmashMedicineFootnote12 is a radical move into a more inclusive and impactful future for healthcare education, embracing cross-directional learning by patients, students, and doctors. Patients learn about key aspects of diagnosis, treatments and medical reasoning, whilst students get a deep understanding of what patients feel is important about their health care experiences. The project promotes an empathetic and shared approach to learning and clinical practice. This paradigm shift in pedagogy empowers citizens, giving them a voice in education like never before. The SmashMedicine project has garnered notable accolades such as the University Of Oxford Vice-Chancellor’s Education Award and was the winner of the Santander Universities Pitch; achievements such as these and collaboration with university programmes at Oxford, Sorbonne and Maastricht University validates their pioneering role in health education.Footnote13
DIGI-IDFootnote14 is another programme that relies on input from the citizens it serves. Its goal is to empower people with intellectual disabilities (ID) who are often left behind in the digital age, with the digital skills and self-confidence to manage their health care and at the same time improve their social interactions. The programme relies on input from a seven-member Citizen Advisory Panel (CAP), individuals with ID whose voices, insights and experiences are heard and included in every critical decision of the programme. Some of the CAP members have never had a job before, much less been ever asked their opinion, so it is significant that now they are being paid as experts and considered the programme’s “digital educators”. One of the CAP members, James Delaney, did not have his own email address until recently and now features in one of the video tutorials in the app giving instructions on how to set one up. He said: “Using email helps me stay in contact with my friends, family and colleagues. I really enjoyed making the video tutorials. Now I can show you how to access the internet!”Footnote15
These programmes are providing important, convincing, first-hand evidence that when patients are valued as educators, the resulting synergy benefits all participants who have a stake in health care – researchers, clinicians, providers, industry, regulators, educators as well as patients and their support network. It is a concept that merits widespread adoption. As Nelson Mandela once said “education is the most powerful weapon which you can use to change the world”. We believe that “patient educators” have a powerful role to play in changing the world of health care.
Acknowledgments
The authors thank Sameena Conning, EIT Health Corporate Affairs Director, Saba Farrukh, EIT Health Working Student and Lee G Kamlet Retired Dean, School of Communications Quinnipiac University, USA for their drafting support.
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10 Ortiz-Piña M, Molina-Garcia P, Femia P, Ashe MC, Martín-Martín L, Salazar-Graván S, Salas-Fariña Z, Prieto-Moreno R, Castellote-Caballero Y, Estevez-Lopez F, Ariza-Vega P. Effects of Tele-Rehabilitation Compared with Home-Based in-Person Rehabilitation for Older Adult’s Function after Hip Fracture. Int J Environ Res Public Health. 2021;18(10):5493.
Mora-Traverso M, Prieto-Moreno R, Molina-Garcia P, Salas-Fariña Z, Martín-Martín L, Martín-Matillas M, Ariza-Vega P. Effects of the @ctivehip telerehabilitation program on the quality of life, psychological factors and fitness level of patients with hip fracture. J Telemed Telecare