Role of active patient involvement in undergraduate medical education: a systematic review

Objectives To identify the scope of active patient involvement in medical education, addressing the current knowledge gaps relating to rationale and motivation for involvement, recruitment and preparation, roles, learning outcomes and key procedural contributors. Methods The authors performed a systematic search of the PubMed database of publications between 2003 and 2018. Original studies in which patients take on active roles in the development, delivery or evaluation of undergraduate medical education and written in English were eligible for inclusion. Included studies’ references were searched for additional articles. Quality of papers was assessed using the Mixed Methods Appraisal Tool. Results 49 articles were included in the review. Drivers for patient involvement included policy requirements and patients’ own motivations to contribute to society and learning. Patients were engaged in a variety of educational settings in and outside of the hospital. The vast majority of studies describe patients taking on the role of a patient teacher and formative assessor. More recent studies suggest that patients are increasingly involved in course and curriculum development, student selection and summative assessment. The new body of empirical evidence shows the wide range of learning objectives was pursued through patient participation, including competencies as professional, communicator, collaborator, leader and health advocate, but not scholar. Measures to support sustainable patient involvement included longitudinal institutional incorporation, patient recruitment and/or training, resource support and clear commitment by faculty. The importance and advantages of patient involvement were highlighted by students, faculty and patients themselves; however, organisations must continue to consider, monitor and take steps to mitigate any potential harms to patients and students. Discussion This systematic review provides new knowledge and practical insights to physicians and faculty on how to incorporate active patient involvement in their institutions and daily practice, and provides suggested action points to patient organisations wishing to engage in medical education.


INTRODUCTION AND RATIONALE
In recent decades, the involvement of patients in medical education has been advocated for increasingly and has become common practice adopted by reformers of medical education. 1Patients and their narratives are no longer just used as subjects for 'learning material' in clinical training.][3][4] Medical educators are now seeing the value of linking medical students with patients and their families and communities to foster awareness of the importance of longitudinal relationships, to improve students' social interaction skills and to facilitate learning of coping with illness in the real world. 5 6espite an increasingly collaborative role of patients in medical education, there is much to be learnt about how to embed it, and how to develop systematic, institutionwide approaches to planning patient involvement in all levels of medical education. 3 7The drive towards a more equal partnership in clinical decision-making and patient-centred care, fuelled by national and international guidelines, promotes the expansion of the

Strengths and limitations of this study
► This systematic review is the first of its kind focused specifically on undergraduate medical education, providing practical guidance to educators, students and patients with ambition to improve work in healthcare professionals' education.► The study provides novel insights in the wide range of learning objectives pursued through patient participation, the educational settings and roles in which patients participate and practical support systems that enable patient engagement.► As many articles written by patients on their experiences in involvement in medical education may only be found in grey literature, including blog posts, conference statements and patient organisation newsletters, this review may have missed their viewpoints.
Open access efforts towards developing a culture where partnership in medical education becomes the norm. 3 5-15s researchers have used varying definitions of active patient involvement in medical education, they have used varying inclusion criteria in their literature searches.This has resulted in overlap of included papers, and limited the generation of a common theoretical framework and terminology. 3 16Previous studies have identified major gaps in the knowledge base relating to short and longterm learning outcomes, ethical issues, psychological impact and key procedural contributors like recruitment, selection and preparation.There is also limited information of the cost-effectiveness of active patient involvement.
Since the publication of the last systematic reviews 1 17-19 and non-systematic reviews 2 8 20 of patient involvement in medical education, many new studies have been published.Previous reviews addressed only the patient teacher role, 1 teaching and assessing one specific skill (intimate examination), 17 included simulated patients, 17 included postgraduate medical education 18 or addressed all healthcare professions. 2 17 20A recent systematic review provided a comprehensive overview of the involvement, outcome and reason behind involvement mainly from learner's perspective. 19ur paper reviews and summarises the most recent literature using a broad definition of patient involvement consisting of any form of involvement that is beyond merely incidental passive involvement, in any field or setting of undergraduate medical education.By adopting this definition we are able to extend the scope and amount of research data in order to increase the practical knowledge base on active patient involvement and in order to give ground to an improved theoretical framework and common terminology.Our study takes a novel approach by focusing primarily on the patients' perspective on their involvement.

Design
Our literature search employed a systematic review method looking for active patient involvement in medical education defined as the direct involvement of real patients and community members in the development, delivery or evaluation of undergraduate education of medical students.

Search strategy
The authors performed a search through PubMed on 12 July 2018.The search terms used on their own and in combination included: patient*, communit*, involvement, engag*, cooperat*, collaborat*, represent*, medical education, curriculum, medical student*.Search criteria were reviewed by a hospital information specialist.The full search strategy can be found in online supplementary file 1.
All articles published in English between 1 January 2003 and 12 July 2018 and reporting primary empirical research that addressed the active participation of patients in undergraduate medical education were eligible for inclusion.Studies with simulated patients or actors, patients solely undergoing examinations or patients who were only being observed in wards were excluded from the review.
We assessed articles based on title and abstract in the first round, and in a second round based on full text.References of all included articles were analysed for additional studies that matched the original inclusion criteria.All reviews that complied with the inclusion criteria were additionally assessed for relevant references.Only original research articles were included in the final analysis.

Quality assessment of included studies
As our review included papers of qualitative, quantitative and mixed methods designs, two authors (SWD and ED) applied the Mixed Methods Appraisal Tool to assess the methodological quality of studies (online supplementary file 2). 21Studies were not excluded based on assessed methodological quality.

Data extraction and synthesis
All authors (SWD, ED, MW) used a prepiloted standardised form to extract data from included studies.A second author checked if the extracted data were accurate, and discrepancies were resolved through discussion.The following data were recorded: authors, year of publication, journal, country intervention, study type, abstract, study setting, financial aspects reported, number of patients in intervention, number of students in intervention, patient characteristics, patient motivations to join, recruitment practices, training and preparation practices, role of patient organisations, type of patient involvement, outcome measurement, organisational remarks on sustainability and pursued learning outcomes.To explore this range of learning outcomes, we categorised intended learning outcomes according to the CanMEDS framework as a commonly applied competency framework within medical schools. 22We organised extracted data in related themes to explore connections and discrepancies between data elements.We opted not to use any of the existing frameworks for grouping potential roles patients take on.In the Discussion section, we compare our findings of the diversity of roles with the existing taxonomy by Towle et al. 2

Patient and public involvement statement
The initial impulse for this study initiative followed a collaboration between the authors as members of the International Alliance of Patients' Organizations (IAPO) and the International Federation of Medical Students' Associations (IFMSA).MW, patient representative and co-author, was involved as an equal partner in all stages of the research project including project initiation, study design, data analysis, discussion and writing of the paper.The initial draft of this paper was presented and discussed at the European Patient Forum 2019 in a plenary session Open access with 300 patient representatives present, feedback from which has been incorporated into the final paper.

Study selection
The initial search resulted in 769 articles, of which 95 were selected for further review based on the title and/or abstract.These 95 articles were independently read by two authors (SWD and ED) and included based on the specified criteria.Consensus between reviewers was 91.2%.The remaining articles were included based on consensus after a short discussion.Main reasons for exclusion where wrong article type (conference abstracts or commentaries) and studies that did not concern active participation of patients.The review of references resulted in 11 additional articles for inclusion.The characteristics of the 49 studies that met inclusion criteria are presented in figure 1 and online supplementary file 3.
We used the extracted data from included studies to synthesise the evidence in the following subsections: ► Rationale for involving patients in medical education.► Patient recruitment and selection.
► Patients' preparation to participate in medical education.► Roles patients take on in medical education.► Learning objectives pursued through patient involvement.► Concerns about the involvement of patients.► Patients' views on the impact of their involvement.► Financial implications of patient involvement.► Roles of patient organisations.► Measures to ensure the sustainability of patient involvement.

Rationale for involving patients in medical education
Several authors referred to government policy mandating patient participation in medical education, namely the UK Department of Health and the UK General Medical Council, 16 23 24 the Australian Medical Council 25 and the WHO 5 as a rationale for their patient involvement initiatives.Besides these political drivers, cited rationales were: to teach students patient-centred and interprofessional care 24 26-28 ; to introduce students to chronic illness care [29][30][31] ; to create a multicultural learning environment; to practise social accountability and an inclusion agenda [32][33][34][35][36][37] ; to make education more engaging, powerful and transformative 38 ; and to empower patients. 39Patients mentioned that they felt a sense of responsibility to the broader community in shaping the future health workforce 24 32 and improving the healthcare system. 24 33 40

Patient recruitment and selection
3][54][55] In one project, where students shadowed a patient with a chronic condition, students were asked to recruit patients themselves. 30election criteria were generally set up broadly, inviting any patient or community member. In some cases patients were required to have representative physical signs of their disease. 53 54 56 57tients' preparations to participate in medical education Twenty articles mention preparation of patient teachers.The duration of the preparation ranged from substantial training sessions of 100 hours in total 42 to the majority of programmes providing solely written information or a single orientation session of 1-1.5 hours. 24 30 32 39 43 49 52 57raining programmes for patients in teaching musculoskeletal (MSK) skills were the most extensive and were delivered by medical or educational experts. 42

Open access
Other preparatory sessions were less formal and were facilitated by faculty educational experts, students or peers.
The primary aims of the preparatory programmes varied.One study underscored the importance of patient educators being aware of the course goals in order to safeguard student learning outcomes. 53Others mentioned aiming to serve the needs of patients in building their confidence, providing skills training 57 and providing knowledge related to the educational process. 23 39 48 60hese sessions addressed approaches such as problembased learning, how to deliver a presentation, cofacilitation methods and how to provide effective feedback.Preparation also provided opportunities for anticipating benefits and challenges such as conflicts, emotions, unmet expectations, using methods of coaching, supervision and debriefing. 40 61ne article mentions finishing the preparation of patient educators with a short quiz as an assessment tool and having a graduation session before starting to teach. 28nother article describes the use of a post-training satisfaction questionnaire to help ensure that patient educators felt ready to teach. 47The majority of papers did not address assessing patients prior to them taking on their roles.
Towle et al discussed the tension between preparedness of patient educators and authenticity of education in both form and content. 49They highlight the critical role of the community organisation representatives who can be brokers between the two cultures of academia and community.One article describes an intervention in which the patient educators explicitly have not received training, so the student-patient encounters would be as authentic as possible. 53Another article described that the collaboration between patients and educators allows for mutual learning without an authentic patient perspective being lost. 39

Roles patients take on in medical education
The main categories of roles that we identified are divided in the areas of a patient as a teacher, an assessor, a curriculum developer and a student selector (table 1).

Patient as teacher
The role of a teacher was cited most frequently.Patient teachers gave clinical skills practicals on history taking and physical examination sessions on their own condition such as MSK disorders. 42 47 54 56 58 59 62They were trained to teach students skills and deliver immediate feedback, which stimulated further learning. 56 People living with HIV participated as teachers during a simulated clinical encounter in which students provided counselling. 60n addition to clinical skills, patients taught students about their experiences of overall management of care, and the personal aspects of their lives.These ranged from practical physical and home adjustments, to psychological, social and behavioural issues impacting them and their family.Teaching was done through panel discussions and small group sessions 24 43 63 as well as visits to the community and patients' homes. 31 52Patient teachers with chronic conditions acted as mentors, and met regularly with students. 27 29atients taught students patient-centredness and interprofessionalism, 23 24 31 38 49 community-centredness, cultural Open access competence and ethics. 33 64Patients could choose their own teaching method, such as telling their stories and stimulating reflection. 38A group of patients living with intellectual and developmental disabilities also participated in the creation of learning materials, through videos sharing their perspectives and stories. 65ost patients in the study by Jackson et al considered themselves not as teaching, but having a role of partnership, explanation and sharing certain aspects of their illness. 52tient as assessor of students' competence In addition to formative student assessment, such as feedback during teaching sessions, patients participated in high stakes summative assessments, such as the final year objective structured clinical examination (OSCE). 39atients also provided written feedback to student essays, which were used for formal assessment. 39Patients assessed mostly non-cognitive domains of student performance. 35 46edical educators interviewed by et al believed there was a role for patients in assessing whether students made them feel at ease and whether students asked the right questions. 66While patients and medical educators in the study by Raj et al 54 praised patients' assessments, students expressed their concerns whether patients could reliably assess clinical skills or whether they were likely to be too lenient. 54tient role in curriculum development Community members were motivated to participate in curriculum development. 35While they were not seen as medical experts, they did have an interest in ensuring optimal healthcare for themselves and their families. 26ommunity members actively participated in the planning, implementation and evaluation of the educational programme. 46 49Patient teachers had autonomy from the stage of planning to the stage of delivery of teaching. 43 67everal patients were members of the steering committee for the psychiatry curriculum 28 and the interprofessional education curriculum. 49atients were involved in the development of courses related to their illness or social conditions. 35Aboriginal delegates provided recommendations for the development of an Aboriginal health curriculum and community placement. 33 44Focus group meetings with Native Hawaiians were held to define a cultural competencies and health disparities curriculum. 37A world café discussion was similarly held to inform the curriculum on transgender health. 36Minority community members provided input on curricular design, especially on the content of the cancer disparities curriculum. 35eyond the disease or competency-specific courses, patients were involved in consultative meetings with stakeholders to identify desirable attributes, competencies of graduates and development of a community-based learning environment. 45Patients were also consulted on the desired characteristics of the curriculum. 68One medical school sought input for the strategic development of the department of population health in a new medical school through focus groups. 69tient role in selection of students to medical schools Community members were invited to join a panel together with clinicians and academic staff members to select students applying for the Graduate Entry Medical Program. 32Members of the community were invited to be a part of the student selection process and team, especially in assessing candidates' communication skills as well as sensitivity, compassion and empathy towards social contexts and societal needs. 45

Collaboration between faculty and patients
The role of faculty members in the collaboration with patient teachers varied.Some patient teachers worked under the supervision of a clinical preceptor. 60In other sessions, patients were cofacilitators with practitioners. 23orkshops were led by patient teachers and facilitated, but not controlled, by faculty.The faculty member's role was to support the direct learning between students and mentors. 49Faculty was not always present in meetings but could provide background support, such as setting broad topics for discussions. 46Patient teachers stated that programme support was essential for participation, allowing them to transform from teaching individual messages to teaching universal lessons. 43ay participants of one study regarded sharing of curriculum ownership as necessary to acknowledge the importance of lay perspectives, whereas faculty participants presumed ownership of curriculum development. 26aculty in the study by Jha et al were not clear on how to involve patients more fully in assessments or course development, nor were they convinced of the appropriateness of doing so.Some faculty members expressed their experiences of working with patient assessors and course developers as tokenistic. 66arning objectives pursued through active patient involvement Learning outcomes of patient participation were quantitatively assessed on the subject of MSK examination skills in four randomised controlled experiments 42 47 54 62 and two further studies.56 59 No difference was observed in increased structured clinical examination (OSCE) scores when comparing sessions delivered by trained patient educators with sessions delivered by rheumatology staff together with a passive patient undergoing examination 54 62 and sessions with a non-MSK specialist physician.42 In the experiment by Humphrey-Murto et al, significantly fewer faculty-taught students failed (0 out of 32) than patient educator-taught students (5 out of 30).62 Students rated faculty educators higher than patient educators (4.13 vs 3.58 on a 5-point Likert scale).62 When students were taught by a patient teacher in addition to the regular faculty-led sessions, their OSCE scores increased more compared with students participating in the regular curriculum.47 An intervention by de Boer et Open access al 59 offered students the opportunity to participate in two non-obligatory real patient learning sessions in the preclinical MSK disorders block. 59 Studentsho participated scored significantly higher at the end-of-block test.
Oswald et al examined how teaching was different between patient educators and physician educators when teaching MSK physical examination skills. 58Video recordings show that trained patient educators were more consistent in content and style by consistently covering all major joints.Bokken et al 53 assessed student's perspectives on instructiveness of real patients versus simulated patients. 53Overall instructiveness was marked high.Students regarded real patients as more authentic and the encounters more useful in practising physical examination.
In the intervention study by Jaworksy et al, medical students provided HIV test counselling to patient instructors. 60Preintervention and postintervention scores of the validated Health Care Provider HIV/AIDS Stigma Scale 70 demonstrated a significant decrease (68.74 vs 61.81).Students reported increased comfort in providing HIVrelated care (10.24 vs 18.06).Similarly, students in intervention studies with patient teachers living with physical or mental disabilities demonstrated an improved attitude, 28 increased levels of comfort in communication, 57 increased levels of self-efficacy and confidence, 63 65 and higher mean performance scores across all interview stations when compared with a control group. 65tudents in the study by Rees et al described the encounters with patients as more motivating compared with textbook learning. 71ide ranges of learning outcomes of education with patient participation were mentioned in the qualitative studies identified by this review.To explore this range of outcomes a categorisation is used according to the CanMEDS framework, developed by the Royal College of Physicians and Surgeons of Canada 22 (table 2).

Communicator
Patient-centredness included the ability to see patient mentors as individuals, 27 the importance of patient autonomy and expertise in care, 64 adopting a nonpatronising and non-judgemental attitude, 55 recognising patients' needs 41 and seeing the patient as a capable part

Communicator
Apply a patient-centred approach to interviewing and care.Adopt to the unique needs and preferences of each patient as an individual, recognising their needs.Communicate using a patient-centred approach that encourages patient trust and autonomy, recognising their expertise in care and seeing them as part of a team.Create an environment for patient comfort, dignity, privacy, engagement and safety by using a nonpatronising and non-judgemental attitude, recognising biases.
Apply communication skills to share information and explanations that are clear and accurate, checking for understanding, using communication skills that help patients make informed decisions.

Collaborator
Work effectively with physicians and colleagues in the healthcare professions through interdisciplinary teams.
Leader Contribute to the improvement of healthcare delivery through understanding the broader healthcare system, and how it affects patients.Open access of the team. 41Jha et al pointed out that active patient involvement by itself demonstrates an equal partnership 66 and Rees et al concluded that this approach helps students to develop a holistic perspective of healthcare. 71ore generally, patient participation was associated with increased understanding of the importance of communication, 27 29 building and improving communication skills, 55 71 empathy, listening skills and respect. 71

Collaborator
McKinlay et al described an education programme in which students undertake a home visit to a patient with a chronic condition, 31 where students demonstrated increased understanding of interdisciplinary teams in management of chronic conditions in their reflective assays.Four authors described interprofessional education programmes in which patients are involved. 23 27 44 49ader In a longitudinal mentor programme with medical, physical therapy, occupational therapy, nursing and pharmacy students teaming up with a patient mentor students reported a deeper understanding of the healthcare system. 27A yearlong student mentor programme gave students an experience in and appreciation of continuity of care. 55

Professional
Various qualitative studies suggested that patient involvement can attribute to dealing with ethical complexity in clinical practice and patients' perspectives on clinician error 64 and developing reflective skills. 29 48 55Reflecting on role models some authors referred to broadening understanding of the role of the healthcare provider, 27 qualities of remarkable clinicians that inform personal ideals, 64 creating a future professional model 55 and professional identity. 71Experiences with real patient educator encounters could also help in coping with uncertainties, emotions and stress. 71xposure to patient educators from within specific patient or minority groups helped students increase positive attitude towards chronic conditions and elderly, 27 31 patients with mental health problems 29 or disabilities. 48

Health advocate
Students reflected on the importance of patient advocacy in day-to-day practice in a study on experiences within an ethics and professionalism module with patient mentors. 64ore specifically, students were empowered to advocate for patients when they are in vulnerable situations.One of the aims of the education programme described by Saketkoo et al was to develop an awareness of the impact of physician advocacy, specifically in the context of people with disabilities. 63A pretest and post-test showed that this awareness increased significantly with the programme.

Scholar
No programmes have explicitly described the aim of developing the competency of scholar.

Medical expert
The role of medical expert integrates all other roles by applying medical knowledge, clinical skills and professional values in the provision of high-quality and safe patient-centred care. Jha et al described the patient as providing an illustration of the theory in practice, thus enhancing students' understanding and recall. 66ncerns about the involvement of patients Various authors have also raised concerns when involving patients as teachers in medical education.Some faculty educators were concerned that patient stories might be so traumatic that students would require support or debriefings to deal with the resulting emotions. 66 71In a qualitative study, students felt 'pressured' by service users asking them for information and advice, rather than asking their clinicians, or when service users divulged information to students that they had not told their clinicians. 71Students worried about giving incorrect information to patients.
Students expressed reservations that they were only getting the view of one person, which could lead to a biased perspective. 23Students were also concerned that patients might have difficulty discriminating between poor and good performance, and are likely to be too lenient in feedback or assessment. 54Students in the study by Henriksen and Ringsted 67 expressed scepticism about patients' knowledge 67 and expressed concerns about unstructured experiential learning in a context where patients had autonomy in both planning and delivering the teaching encounter. 67In a different study, staff members expressed the concern that the impact of the patient experience might be reduced if the same patient was involved in the same programme too often. 66tients' views of the impact of their involvement Patients described a strong sense of having a meaningful contribution and personal fulfilment, because they were teaching patient-centredness, 24 72 offering their body and authenticity, bolstering students' confidence, 72 fulfilling their responsibility to the broader community 24 32 and improving the healthcare system.24 33 40 On an individual level patients described material, professional, personal and emotional benefits.Material benefits included receiving tangible rewards such as gifts 43 and receiving a full medical check-up.40 Patient educators with back pain involved in teaching medical students stated their participation improved the management of their own back pain, and improved confidence in voicing their needs in consultations with physicians.47 Some patients felt that they received more time and attention from their healthcare professionals when they were teaching.71 Patients described professional growth and personal fulfilment from being involved in the selection process of students.32 Hatem et al reported practical benefits for Open access patients including getting better at finding healthcare providers and increased knowledge of their medical condition.43 The drawbacks and risks associated with patient involvement in medical education included being confronted with stigmatising assumptions, vulnerability of self-disclosure and spontaneous question-answer exchanges. A patent educator teaching on the subject of HIV, for example, described the experience of being very frustrated with one man's lack of knowledge and ignorance about the disease.Patients also drew attention to the fact that unanticipated disease progression had an impact on their ability to teach. Insome cases, this resulted in them pulling out of their commitment as teachers, an inevitable loss among patient educators.43 Patients also described a sense of vulnerability to negative and non-appreciative reactions from students. 40 47Initially, mentors were commonly anxious and unsure about whether what they shared was of benefit to students.29 Half of the patients involved in the community-based intervention in a socioeconomicdeprived area expressed feelings of anxiety, apprehension or nervousness prior to the interview, although in all cases patients felt that this was normal. 52 In adtion to the word 'vulnerable', patients employed terms like 'exposed', 'frightened', 'tired', 'stressed' and 'harrowing' to emphasise service users' feelings within the clinical education environment.71 Some even described it as traumatic for mental health service users to repeatedly tell their stories.71

Financial implications of patient involvement in medical education
Nineteen articles commented on any financial aspect of the interventions, ranging from reimbursement of patients' expenses, payments of honoraria, organisational costs or perceptions of cost.Economic and financial resources, however, have not been explored in a way that they can be systematically compared.Reported financial costs included $800 for a disability skills workshop, 63 £800 for a physical examination training 54 and £2640 for the overall Patient Partners programme. 47en studies offered participating patients remuneration through honoraria between €8 per hour and £350 per day 43 53 54 or an unspecified amount. 28 35 39 48 50 57Four studies offered reimbursement of patient expenses such as travel, phone or mail costs. 24 34 47 65Some staff feared that cash patients needed to spend on refreshments or public transport would be a barrier for their participation. 73edical educators suggested that patient involvement was a costly endeavour, both in financial investment as well as staff time. 71Only one article commented on costeffectiveness, noting that patient-led teaching is a costeffective method compared with physician-led teaching, but did not provide an economic evaluation. 54No paper provided a cost-effectiveness or cost-benefit analysis.

Roles of patient organisations
The most cited interaction between patient organisations and medical faculties was the use of patient organisations and their networks for the recruitment of individual patients as community members or members of conditionspecific support groups. 24 28 29 36 49 55 56 60 69In the paper by Baral et al, representatives from rural communities and consumer groups were consulted by the medical school steering committee for the development of the Academy of Health Sciences curriculum. 45Representatives of community-based patient advocacy and support organisations took part in the advisory group of the intervention in the study by Towle and Godolphin. 49Not all of these representatives of patient organisations were patients themselves.They were described as brokers between two cultures of academia and community.
The University of Leeds worked with a dedicated internal patient group named 'The Patient Voice Group', consisting of lay people who use their experiences to inform their roles as teachers and researchers.This group was involved in formative and summative assessment.Additionally, a patient and public involvement manager who provided ongoing support was assigned within the school. 39ome medical educators made the explicit choice not to collaborate with patient organisations, due to a fear of working with politicised groups. 71They did make a decision to include groups of patients to allow multiple voices to be heard in order to prevent criticisms of tokenism.Patients stated that participating in groups gave them support and companionship from their peers. 71atient organisations wishing to engage in medical education may wish to consider some of the practical points as described in box 1 .

Measures to ensure the sustainability of patient involvement
The key factors identified in sustaining patient involvement were the provision of adequate resource support, formal acknowledgement of the value of lay contributions and a clear faculty commitment to change following lay input. 26nstitution-wide incorporation of social accountability or patient-centred education and medicine in the university's mission and vision statement or strategic plan was cited in several papers to ensure patient and community involvement. The incorporation of initiatives as ongoing modules in the curriculum achieved sustainable patient involvement rather than sporadic involvement. 53 63n the University of Leeds, a permanent patient voice group was incorporated in the institution. 39The institution appointed a patient and public involvement manager to provide ongoing support.Some initiatives chose to work in partnership with existing institutions, implemented at a school-wide level 45 or focused on one Open access such as arthritis. 58Gaver et al 55 identified the process of establishing commitment among volunteering organisations and families as a key challenge to the sustainability of patient involvement. 55edical educators commented that if patient educators were paid and seen as an employee of the medical school, they might take on the role more seriously and become more reliable, as well as being seen as a respected part of the educational team. 66

DISCUSSION
This review systematically evaluated 49 primary empirical studies and was aimed at providing updated integrated evidence on the role and impact of the active involvement of patients in medical undergraduate education.The new body of empirical evidence shows the increasing range of learning objectives and educational settings in which patients play an active part in undergraduate medical education.
Our study found that patients described material, professional, personal and emotional benefits of participating in medical education.In addition to expected benefits, several authors mentioned policy mandates as rationale for initialising patient involvement programmes.Several studies however reported on the potential harms and negative experiences, such as fear of stigmatisation, tokenism or lacking structure of teaching session.Concerns related to patient involvement coming from students, faculty and patients themselves should remain closely monitored in a systematic manner and addressed appropriately.
Included papers described various types of roles for patients, but the vast majority of papers cited the role of a patient teacher, similarly to previous reviews. 1 17-19ore recent papers suggest that patients are increasingly involved in curriculum development.Most of these initiatives were incidental and were lacking institutional incorporation and longitudinal involvement.
The patients' roles identified in this review are largely in accordance with levels 3-6 of the spectrum proposed in the review by Towle et al 2 (box 2).We additionally identified new roles that could not be ascribed to one specific level on this spectrum.In one role, patients did take on roles as equal in curriculum development, but only to specific courses rather than the curriculum as a whole, falling between Towle's levels 4 and 5.In another role, patients were consulted in institution-level topics and curriculum development beyond specific courses, but rather than being equal partners, they were consulted in a faculty-driven initiative, displaying partial elements of Towle's levels 4, 5 and 6. 2 The learning objectives identified in this review encompassed all but one of the CanMEDS roles for future physicians.This demonstrates that patient's involvement is continuing to gain a larger influence on a diverse range of aspects of the medical curriculum.
Measures to support sustainable patient involvement included longitudinal institutional incorporation, patient recruitment and/or training, resource support and clear commitment by faculty.The importance and advantages of patient involvement were highlighted by students, faculty and patients themselves; however, organisations must continue to consider, monitor and take steps to mitigate any potential harms to patients and students.Only few papers reported on the financial aspects related to patient involvement, which should be further investigated to help support feasibility.
An important limitation was the lack of common terminology in the existing literature, potentiating the risk of missing relevant articles, which has been previously reported as a limitation by other review authors. 2 Box 1 Practical points for patient organisations wishing to engage in medical education Practical points for patient organisations ► Highlight potential benefits of involvement in medical education to members and respond to common motivations.► Facilitate peer support networks among patients involved in medical education.► Investigate whether teaching facilities in your area have existing frameworks for patient and public involvement, have made explicit commitments to patient and public involvement and/or have appointed officers specifically assigned to patient and public involvement that could provide you with a starting point for collaboration.► Call for the creation of a patient committee or advisory group within a medical faculty to enable and safeguard structural input into the educational process.► Determine which step of the educational process is best suited for your goals.You might choose to focus your efforts on the mission and vision of the school, learning objectives, educational strategies, teaching, assessment of learners or the evaluation of the course.► Not every meaningful intervention has to be at an overall faculty level, they may also be on specific areas such as one learning objective or a disease-specific course.► Showcase successful collaborations with universities and best practices to the wider patient and academic communities.Our systematic review included only original literature from peer-reviewed journals.As many articles written by patients on their involvement in medical education may only be found in grey literature, including blog posts, conference statements and patient organisation newsletters, this review runs a risk of having missed important aspects of patient views on this topic.Additionally, only studies written in English were included, which may have led to bias in selected papers.The majority of included papers were from North America (n=23), Europe (n=17) and Australia and New Zealand (n=7).
The majority of included studies were qualitative (n=38), others were mixed methods (n=5) or qualitative (n=6).Only few of the included papers used control groups (n=7).In most cases, students and patients participated in interventions on a voluntary basis, which may limit the generalisability of findings to the wider population.Another important factor that may have introduced bias is that most studies were not (possible to be) anonymised, or were part of student assessments, which introduces a risk of responses being subject to social desirability bias.
Future research should focus on the long-term effects for patients, students and the healthcare system, especially on the subjects of patient-centredness and shared decision-making.This gap in research limits recommendations that can be made based on current literature.Additionally, no paper performed an economic evaluation of patient involvement, which may be a critical factor for decision makers in educational policy.Finally, more research is needed to update existing frameworks for patient involvement to the newly identified roles and needs patients have in medical education.

CONCLUSION
It has been over 40 years since the first article on patient involvement in medical education was published.Today, both the medical education community and the patient community have joined together in the movement to promote patient-centredness.This systematic review provides knowledge and practical considerations that can aid curriculum developers who wish to sustainably incorporate active patient involvement in their institutions, and patient organisations wishing to engage in medical education.
Twitter Stijntje Willemijn Dijk @StijntjeDijk Acknowledgements The authors thank Tessa Richards (BMJ Patient and Public Involvement lead) for her valuable comments and suggestions.
Contributors SWD and ED jointly developed the review protocol and search strategy.SWD, ED and MW jointly developed the data extraction sheet.The search strategy was critically reviewed by a hospital information specialist.Data collection was carried out by SWD and ED and extraction was carried out by SWD, ED and MW.The paper was written jointly by all three authors.Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.The authors confirm that the data supporting the findings of this study are available within its supplementary materials.
Open access This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made.See: https:// creativecommons.org/ licenses/ by/ 4. 0/.

Figure 1
Figure 1 Results of the systematic literature search.

Box 2
Spectrum of patient involvement in medical education by Towle et al 2 Levels of patient involvement in medical education as defined by Towle et al 2 access

Table 1
Identified patient roles in medical educationParticipate in the selection of students applying for the medical programme.Assess candidates' communication skills, sensitivity, compassion and empathy towards societal contexts and needs.
SpecificationPatient teacherDeliver clinical skills sessions on history taking, counselling and physical examination.Deliver formative feedback during teaching sessions.Share experiences in healthcare or personal aspects of their lives in teaching sessions, small group sessions, individual mentorship and coaching, or through the creation of videos.OSCE, objective structured clinical examination.

Table 2
Aspired learning objectives for medical students based on the CanMEDS framework