The case for patient involvement in medical curriculum development
BMJ 2024; 386 doi: https://doi.org/10.1136/bmj-2024-080641 (Published 26 September 2024) Cite this as: BMJ 2024;386:e080641
- Amber Bennett-Weston, post-doctoral researcher1,
- Jennifer Bostock, involvement strategy fellow2,
- Jeremy Howick, professor of empathic healthcare1
- 1Stoneygate Centre for Empathic Healthcare, Leicester Medical School, University of Leicester, Leicester, UK
- 2Patient representative, Care Policy and Evaluation Centre, London School of Economics, London, UK
- Correspondence to: A Bennett-Weston abw13{at}leicester.ac.uk
Historically, patients were “wheeled in” to lecture theatres, often without consent, to demonstrate illnesses to students.1 The shift to patient centred care and shared decision making over the past few decades has led to more active and prominent roles for patients and carers (here we use “patients” to include both for succinctness) in medical education.234 However, involving patients in developing curriculums seems to be less common, particularly in the UK.23 This is despite the General Medical Council (GMC) requirement that curriculum development be informed by “patients, families and carers”5 and contrasts with medical research, in which patient and public involvement from design to dissemination is often required.6
Patient involvement in medical curriculum development has been shown to improve patient centred care and practitioner wellbeing by enhancing empathy.78 Given the UK’s current crises with medical student910 and healthcare practitioner burnout,11 and the record low patient satisfaction with the NHS,12 action to increase patient involvement in curriculum development is timely.
What is the evidence?
Development of undergraduate and postgraduate medical curriculums involves identifying a subject of interest, writing learning objectives, determining content, selecting educational strategies, and planning evaluation.13 Patients should be actively engaged throughout this process.1
Systematic reviews reveal little published evidence on patient involvement in medical curriculum development,2314 but a handful of studies have described the process and impact of patient involvement in the development of curriculums on cancer inequalities,15 patient centred care,16 mental health,17 disability,18 transgender healthcare,19 and end-of-life care.20 Most originate from the United States (US) and Canada, but one UK study18 has been recognised as good practice by the GMC.10 The scarcity of UK studies could be related to insufficient stringency in the GMC’s quality assurance processes for patient involvement in curriculum development; medical schools are not currently required to declare whether, or how, they involve patients in curriculum development.21 However, absence of evidence is not evidence of absence,22 and a survey of patient involvement in curriculum development at UK medical schools is required to confirm this.
Examples of good practice (box 1) share several elements.161819 First, patients were involved multiple times throughout the curriculum development process. Second, there was at least one designated person responsible for recruiting and supporting patients. Third, clear roles were defined for the patients, educators, and students involved. Finally, patients’ contributions were translated into concrete objectives and curricular changes with support from educators. Although patients must understand the remit of their involvement, and how this fits into the broader picture of medical curriculums, they do not need in-depth familiarity with pedagogy to contribute meaningfully.
Patient involvement in curriculum development
University of British Columbia, Canada16
Patients identified what they thought students needed to learn about chronic illness and how they wanted to teach this, over a series of several meetings. Faculty translated the discussions with patients into concrete learning objectives and educational strategies, and the students provided feedback on these. Evaluation of the workshops developed showed improvements in students’ patient centredness.
University of Louisville School of Medicine, US19
The medical school involved transgender patients in the development of a curriculum on transgender health inequalities. A world café approach was used with patients, faculty, and students, followed by small group discussions. Curriculum changes included separate education about transgender health needs and specific aspects of transgender care, such as cross-gender hormone therapy.
Leicester Medical School, UK18
Participatory action research was used to include patients as partners in the development of an interprofessional workshop about disability. The workshop was developed cyclically in several phases. Evaluation showed improvements in students’ interprofessional communication for patient centred care.
Benefits of involving patients
Beyond being a GMC requirement in the UK,523 there are multiple reasons to involve patients in developing medical curriculums. Inclusion of patients can bridge the gap between patients’ and professionals’ views on quality care,7 potentially improving patient satisfaction,7 safety, mortality, and treatment adherence.24 Medical curriculums have long been criticised for focusing too heavily on biomedical knowledge at the expense of interpersonal skills, which patients highly value.2526 Relatedly, declining patient satisfaction has been linked to poor interpersonal care,1227 especially as health systems become increasingly overstretched. Enhancing interpersonal care through patient involvement in curriculum development could align medical training with patient expectations, thus improving ratings of healthcare quality.
Patient input into curriculums would also improve social accountability. This is in line with a 1995 World Health Organization report calling for medical schools to address the needs of the communities they serve.28 The report stated that these needs should be identified jointly “by governments, health care organisations, health professionals and the public.”28 Patient involvement in curriculum development helps to fulfil this imperative.29 A vital component of social accountability is transparency, which requires patients to have a clear understanding of how and why medical curriculums are developed, implemented, and assessed.30 Involving patients in curriculum development is essential to ensure that curriculums are accessible and responsive to societal demand.3031
Patient involvement would help enable continual improvement and adaptation of curriculums. Internationally, regulatory and accreditation bodies include statements in their standards requiring that institutions continually seek to improve education quality.5233233 Continued engagement with patients can highlight gaps in medical curriculums, challenge outdated representations of patients’ values and needs, and ensure that medical education evolves in line with the rapidly changing needs of society.34
There are also important ethical and democratic imperatives for involving patients in curriculum development. These are often discussed in relation to research but are largely overlooked in medical education.25 As key stakeholders and end users of medical education, patients should have a voice in shaping the curriculums that affect them. This involvement ensures that medical education is done with, rather than to or for, patients.25
Another benefit of patient involvement in curriculum development is that it can help reverse the decline in empathy that occurs as medical students progress through training.35 This decline negatively affects patients (who have worse outcomes when treated by less empathetic doctors)36 and doctors (who are more likely to experience burnout if they are less empathetic).8 The concerningly high levels of burnout among medical students and doctors emphasises the importance of tackling this.911 Lack of patient involvement in medical education has been shown to contribute to the decline in empathy,35 so including patients in the development of curricular content could help maintain, and even enhance, empathy.
Involving patients in curriculum development could also enhance collaboration across disciplines through interprofessional education, an area where medicine has been criticised as lagging behind other professions.37 Given that patients’ experiences often highlight the importance of interdisciplinary teamworking for providing patient centred care, involving patients in developing medical curriculums is likely to promote the development of interprofessional education.1618 The benefits of interprofessional learning include increased awareness of other healthcare professionals’ roles, more collaborative teamworking, and better patient outcomes.38
Three challenges of patient involvement
Lack of funding, absence of guidance on best practice, and difficulties in recruiting diverse patients are all challenges to involving patients in curriculum development.39 Funding is required to pay for an experienced patient involvement lead and, where appropriate, for patients’ time and expenses. Yet, proponents of patient involvement often report a lack of funding.31439 However, patients are already involved in curriculum delivery,3 showing there is some resource allocated to patient involvement. Involving patients in curriculum development might be achieved with similar resources to those required for involvement in its delivery. In both cases, patients should be briefed about their role, remunerated, and have a nominated point of contact to support their meaningful involvement.40
Another challenge is that, in the absence of guidance on best practice,40 educators may be reluctant to involve patients in curriculum development. Repeated calls have been made for greater understanding of how patients can provide input into healthcare curriculums for maximum benefit to learners, patients, and healthcare systems.140 To start addressing this, we propose seven steps for involving patients in developing medical curriculums (box 2). These steps are based on published examples,1516171941 previous research,140 and established approaches to curriculum development.13
Steps for involving patients in developing medical curriculums
Recruit patients (eg, from patient advocacy groups, local charities, and primary and secondary healthcare services) and establish how they will be remunerated
Appoint a point of contact who has experience in curriculum development and patient involvement
Agree on roles for patients, educators, and, where relevant, students
Train patients in medical education and curriculum development, and identify and address their support needs
Engage regularly with patients to:
Identify gaps in the curriculum
Determine what they want doctors to learn (learning objectives)
Discuss how these objectives could be achieved
Consider how the curriculum will be evaluated
Debrief patients
Embed feedback loop to communicate effect of involvement to patients
A third challenge is recruiting and retaining diverse groups of patients.42 Patient involvement is widely acknowledged to be often limited to a “specific population of patients [usually white, retired patients] rather than reflecting the diversity of lived experiences.”43 This general problem with ensuring adequate diversity in patient involvement must be addressed. While improvements are being made to improve diversity in research,44 work remains to be done in medical education.43 However, some patient involvement (even that which is not fully representative) is better than no patient involvement, and diversity is likely to develop over time. Still, efforts must be made to encourage and accommodate diverse patient involvement in medical education. For example, educators should offer remuneration, organise involvement for convenient times (considering patients’ healthcare appointments, caring responsibilities, and work), and build relationships with local, under-represented communities.
Research agenda to inform practice
There is no “gold standard” (or any standard for that matter) for involving patients in developing medical curriculums.40 More research is required to test and refine our proposed steps for patient involvement in curriculum development (box 2) and to understand the most efficient and effective ways for involving patients. This includes a survey of the extent and nature of patient involvement in medical curriculums, and determining the most appropriate core outcomes for patients, students, and postgraduate learners. Once core outcomes have been identified, the long term effects of patient involvement should be explored.1 The specific outcomes may include student performance throughout their training and beyond, patient outcomes, and feedback from patients about their experience of being involved to enable continual improvement.45
Moreover, research is needed to explore approaches to recruiting and retaining a diverse group of patients to be involved in medical education. Previous research has explored the possible barriers and facilitators to involving patients in higher education institutions.42 However, the study included only patients who were already involved in healthcare research and education,42 possibly missing insights from patients who are not involved and may experience different barriers.
Dedicated funding to advance patient involvement
Sustained patient involvement in curriculum development requires a consistent source of funding. At present, funding for patient involvement is often borrowed from existing budgets for other medical school activities, which makes patient involvement fragile and can be a source of contention. This contention often reflects fears that involving patients in medical curriculums will come at the expense of existing curricular content on subjects such as biomedical science.39 Although patients’ contributions to medical curriculums are essential, we recognise that they represent one part of a broader picture.29 However, patient involvement in medical curriculums should not be considered a challenge to medical expertise but instead, as complementary.
The provision of clearer requirements and quality assurance processes by regulatory bodies might help to ensure that institutions allocate funding specifically for patient involvement. As such, following research to identify best practice, regulatory bodies must implement more stringent quality assurance processes to hold medical schools and educational institutions to account. Ideally, however, funding would come from the government. In the UK, the Department of Health and Social Care offers each institution up to £7400 each academic year for patient involvement in undergraduate social work education.46 Investing similarly in patient involvement in medical education would be likely to reap rewards for patients, students, and healthcare systems.
As recipients of the care that will be delivered by tomorrow’s doctors, patients have a right to influence what and how medical students and trainees are taught. Involving patients in curriculum development is essential for preparing doctors to value and respond to their patients’ needs. This ultimately holds the potential to improve the quality of healthcare delivery and, in turn, patient outcomes. This may have positive economic effects on healthcare systems as well as improving practitioner wellbeing. Further research is needed to refine guidance on how to involve patients in developing medical curriculums. Doing so will benefit medical students, doctors, and patients alike.
Key messages
Despite being a GMC requirement, patient involvement in development of medical curriculums is less common than in their delivery
Involving patients in the development of medical curriculums will help prepare doctors to deliver patient centred care
Such involvement has the potential to improve patient outcomes and practitioner wellbeing
More research is needed to explore best practices for effective and inclusive patient involvement in medical education
Footnotes
Contributors and sources: ABW is a researcher with expertise on patient involvement in health professions education. JB is a patient representative and has several public and patient involvement roles. JH has expertise on topics including therapeutic empathy (in education, research, and practice), evidence based medicine, and use of placebos. All authors contributed to the writing of this article, reviewed drafts, and approved the final manuscript. ABW is the guarantor.
Public and patient involvement: A patient representative (JB) is a co-author. JB made specific suggestions to strengthen our argument for advancing patient involvement in medical curriculum development and provided a patient perspective on why this is important.
Competing interests: We have read and understood BMJ policy on declaration of interests and have no conflicts of interest to declare. ABW and JH are funded by the Stoneygate Trust, which supports medical research and education. The funder had no role in the conceptualisation or writing of this manuscript.
Provenance and peer review: Not commissioned; externally peer reviewed.