Abstract
While patient engagement in healthcare professions education (HPE) has significantly increased in the past decades, a theoretical gap remains. What are the varied reasons as to why patients get involved with HPE programs? With a focus on understanding what drives patient involvement with HPE programs, this study examined how a patient as teacher (PAT) program was experienced by medical students, patient teachers, and faculty within a medical school. Through a phenomenographic approach, this study captures and describes the different ways our study participants experienced a PAT program (the ‘phenomenon’). 24 semi-structured interviews were conducted in total, comprised of interviews with patient teachers (N = 10), medical students (N = 10) and program facilitators (N = 4) who participated in a PAT program. Our focus was on participants’ description of the program and was grounded in their experiences of as well as their beliefs about it. Our findings captured 4 layers representing the qualitatively different (yet interrelated) ways in which participants experienced/perceived and conceptualized the various aspects of their experience with the PAT program: (1) A productive disruption of the learning space (2) A re-humanization within healthcare (3) A means of empowerment and agency (4) A catalyst for change and emancipation. Our outcome space results can be visually illustrated by a nesting "Matryoshka" doll, representing the four layers and depicting the process of uncovering the less conscious layers of sense-making within this phenomenon. HPE programs that are co-produced with patients and actively involve patients as teachers have the potential, but not guarantee, to be emancipatory. To engage in PAT programs that exhibit an emancipatory potential, we need to consider transformative paradigms of education, which are aligned with social change, and disrupt the traditional teacher-learner hierarchy.
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References
Agrawal, S., Capponi, P., López, J., Kidd, S., Ringsted, C., Wiljer, D., & Soklaridis, S. (2016). From surviving to advising: A novel course pairing mental health and addictions service users as advisors to senior psychiatry residents. Academic Psychiatry, 40(3), 475–480. https://doi.org/10.1007/s40596-016-0533-z
Assarroudi, A., & Heydari, A. (2016). Phenomenography: A missed method in medical research. Acta Facultatis Medicae Naissensis., 33(3), 217–225. https://doi.org/10.1515/afmnai-2016-0023
Baker, L., Shing, L. K., Wright, S., Mylopoulos, M., Kulasegaram, K., & Ng, S. (2019). Aligning and applying the paradigms and practices of education. Academic Medicine, 94(7), 1060. https://doi.org/10.1097/ACM.0000000000002693
Barnard, A., & Gerber, R. (1999). Understanding technology in contemporary surgical nursing: A phenomenographic examination. Nursing Inquiry, 6(3), 157–166. https://doi.org/10.1046/j.1440-1800.1999.00031.x
Bleakley, A., & Bligh, J. (2008). Students learning from patients: Let’s get real in medical education. Advances in Health Sciences Education: Theory and Practice, 13(1), 89–107. https://doi.org/10.1007/s10459-006-9028-0
Boler, M. (1999). Feeling power emotions and education. Routledge.
Coleman, T. (2020). Anti-racism in nursing education: Recommendations for racial justice praxis. Journal of Nursing Education., 59(11), 642–645. https://doi.org/10.3928/01484834-20201020-08
Dorozenko, K., Ridley, S., Martin, R., & Mahboub, L. (2016). A journey of embedding mental health lived experience in social work education. Social Work Education., 35(8), 905–917. https://doi.org/10.1080/02615479.2016.1214255
de Groot, E., Schönrock-Adema, J., Zwart, D., Damoiseaux, R., Van den Bogerd, K., Diemers, A., Canét-Wittkampf, C. G., Jaarsma, D., Mol, S., & Bombeke, K. (2020). Learning from patients about patient-centredness: A realist review: BEME Guide No. 60. Medical Teacher., 42(4), 380–392. https://doi.org/10.1080/0142159X.2019.1695767
Fadoju, D., Azap, R. A., & Nwando, O. J. (2021). Sounding the alarm: Six strategies for medical students to champion anti-racism advocacy. Journal of Healthcare Leadership, 18(13), 1–6. https://doi.org/10.2147/JHL.S285328. PMID: 33500675.
Fielden, S., & O’Rourke, R. (2016). “My way of giving something back”: Patient and carer experiences of involvement in medical education. MedEdPublish., 5(3), 133.
Foucault, M. (1973). The birth of the clinic: An archeology of medical perception. New York: Pantheon Books.
Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
Freire, P. (1970). Pedagogy of the oppressed. Seabury Press.
Gillam, S. (2016). The reappearance of the sick man: a landmark publication revisited. British Journal of General Practice, 66(653), 616–617. https://doi.org/10.3399/bjgp16X688153
Gordon, M., Gupta, S., Thornton, D., Reid, M., Mallen, E., & Melling, A. (2020). Patient/service user involvement in medical education: A best evidence medical education (BEME) systematic review: BEME Guide No 58. Medical Teacher, 42(1), 4–16. https://doi.org/10.1080/0142159X.2019.1652731
Hawthornthwaite, L., Roebotham, T., Lee, L., & O’dowda M, Lingard L. (2018). Three sides to every story: Preparing patient and family storytellers, facilitators, and audiences. Permanente Journal, 22, 17–119. https://doi.org/10.7812/TPP/17-119
Henriksen, A., & Ringsted, C. (2011). Learning from patients: Students’ perceptions of patient-instructors. Medical Education, 45(9), 913–919. https://doi.org/10.1111/j.1365-2923.2011.04041.x
Henriksen, A., & Ringsted, C. (2014). Medical students’ learning from patient-led teaching: Experiential versus biomedical knowledge. Advances in Health Science Education, 19(1), 7–17. https://doi.org/10.1007/s10459-013-9454-8
Hooks, B. (1994). Teaching to transgress: Education as the practice of freedom. New York: Routledge.
Inglis, T. (1997). Empowerment and emancipation. Adult Education Quarterly, 48(1), 3–17. https://doi.org/10.1177/074171369704800102
Larsson, J., & Holmström, I. (2007). Phenomenographic or phenomenological analysis: Does it matter? Examples from a study on anaesthesiologists’ work. International Journal of Qualitative Studies on Health and Well-Being., 2(1), 55–64. https://doi.org/10.1080/17482620601068105
Jewson, N. (1976). The disappearance of the sick-man from medical cosmology, 1770–1870. Sociology, 10(2), 225–244.
Jha, V., Quinton, N. D., Bekkers, H. L., & Roberts, T. E. (2009). Strategies and interventions for the involvement of real patients in medical education: A systematic review. Medical Education, 3(1), 10–20. https://doi.org/10.1111/j.1365-2923.2008.03244.x
Jha, V., Winterbottom, A., Symons, J., Thompson, Z., Quinton, N., Corrado, O. J., Melville, C., Watt, I., Torgerson, D., & Wright, J. (2013). Patient-led training on patient safety: A pilot study to test the feasibility and acceptability of an educational intervention. Medical Teacher, 35(9), e1464–e1471. https://doi.org/10.3109/0142159X.2013.778391
Jha, V., Buckley, H., Gabe, R., Kanaan, M., Lawton, R., Melville, C., Quinton, N., Symons, J., Thompson, Z., Watt, I., et al. (2015). Patients as teachers: A randomised controlled trial on the use of personal stories of harm to raise awareness of patient safety for doctors in training. BMJ Quality and Safety, 24(1), 21–30. https://doi.org/10.1136/bmjqs-2014-002987
Kumagai, A. K., & Naidu, T. (2015). Reflection, dialogue, and the possibilities of space. Academic Medicine, 90(3), 283–288. https://doi.org/10.1097/ACM.0000000000000582
Kumagai, A. K. (2008). A conceptual framework for the use of illness narratives in medical education. Academic Medicine, 83(7), 653–658. https://doi.org/10.1097/ACM.0b013e3181782e17
Kumagai, A. K., Murphy, E. A., & Ross, P. T. (2009). Diabetes stories: Use of patient narratives of diabetes to teach patient-centered care. Advances in Health Sciences Education: Theory and Practice, 14(3), 315–326. https://doi.org/10.1007/s10459-008-9123-5
Lefkowitz, A., Vizza, J., & Kuper, A. (2022). Patients as experts in the illness experience: Implications for the ethics of patient involvement in health professions education. Journal of Evaluation in Clinical Practice. https://doi.org/10.1111/jep.13672
Luckner, H., Doucet, S., & Wells, S. (2012). Patients as educators: The challenges and benefits of sharing experiences with students. Medical Education, 46(10), 992–1000. https://doi.org/10.1111/j.1365-2923.2012.04356.x
Marton, F. (1981). Phenomenography – Descripting conceptions of the world around us. Instructional Science., 10(2), 177–200.
Moniz, T., Costella, J., Golafshani, M., Watling, C., & Lingard, L. (2021). Bringing narratives from physicians, patients and caregivers together: A scoping review of published research. Medical Humanities, 47(1), 27–37. https://doi.org/10.1136/medhum-2017-011424
Morgan, M. (2008). The doctor-patient relationship. In G. Scambler (Ed.), Sociology as applied to medicine (6th ed.). London: Saudners Elsevier.
Parsons, T. (1951). The social system. Routledge & Kegan Paul.
Regan de Bere, S., & Nunn, S. (2016). Towards a pedagogy for patient and public involvement in medical education. Medical Education, 50(1), 79–92. https://doi.org/10.1111/medu.12880. PMID: 26695468.
Rowland, P., McMillan, S., McGillicuddy, P., & Richards, J. (2017). What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories. Health (London, England), 21(1), 76–92. https://doi.org/10.1177/1363459316644494
Rowland, P., & Kumagai, A. K. (2018). Dilemmas of representation: Patient engagement in health professions education. Academic Medicine, 93(6), 869–873. https://doi.org/10.1097/ACM.0000000000001971
Rowland, P., Anderson, M., Kumagai, A. K., McMillan, S., Sandhu, V. K., & Langlois, S. (2019). Patient involvement in health professionals’ education: A meta-narrative review. Advances in Health Sciences Education: Theory and Practice, 24(3), 595–617. https://doi.org/10.1007/s10459-018-9857-7
Sharda, S., Dhara, A., & Alam, F. (2021). Not neutral: Reimagining antiracism as a professional competence. CMAJ., 193(3), E101–E102. https://doi.org/10.1503/cmaj.201684
Sharma, M. (2018). “Can the patient speak?”: Postcolonialism and patient involvement in undergraduate and postgraduate medical education. Medical Education, 52(5), 471–479. https://doi.org/10.1111/medu.13501
Soklaridis, S., de Bie, A., Cooper, R. B., McCullough, K., Beder, M., McGovern, B., et al. (2020). Co-producing psychiatry education with service user educators: A collective autoethnographical case study of the meaning, ethics and importance of payment. Academic Psychiatry, 44(2), 159–167. https://doi.org/10.1007/s40596-019-01160-5
Stenfors-Hayes, T., Hult, H., & Dahlgren, M. A. (2013). A phenomenographic approach to research in medical education. Medical Education, 47, 261–270. https://doi.org/10.1111/medu.12101
Szumacher, E. (2019). Patients’ engagement in medical education. J Canc Educ., 34, 203–204. https://doi.org/10.1007/s13187-019-01496-4
Towle, A., Brown, H., Hofley, C., Kerston, R. P., Lyons, H., & Walsh, C. (2014). The expert patient as teacher: An interprofessional Health Mentors programme. The Clinical Teacher, 11(4), 301–306. https://doi.org/10.1111/tct.12222
Towle, A., & Godolphin, W. (2013). Patients as educators: Interprofessional learning for patient-centred care. Med Teacher., 35(3), 219–225. https://doi.org/10.3109/0142159X.2012.737966
Towle, A., Bainbridge, L., Godolphin, W., Katz, A., Kline, C., Lown, B., et al. (2010). Active patient involvement in the education of health professionals. Medical Education, 44(1), 64–74. https://doi.org/10.1111/j.1365-2923.2009.03530.x
Towle A. Involving patients in the education of health care professionals. (2007). J Health Serv Res Policy. 12(1):1–2. https://doi.org/10.1258/135581907779497585
Williamson, C. (2008). The patient movement as an emancipation movement. Health Expectations, 11(2), 102–112. https://doi.org/10.1111/j.1369-7625.2007.00475.x
Williamson, C. (2010). Towards the emancipation of patients: Patients’ experiences and the patient movement. The Policy Press.
Williamson, C. (2016). Fostering empowerment: Ethical, political, and practical considerations. British Journal of General Practice, 66(652), e858–e860. https://doi.org/10.3399/bjgp16X687889
Williamson, C. (2018a). ‘Real’ patients and ‘real’ doctors? Doctors and patient activists in working relationships. British Journal of General Practice, 68(677), 591–592. https://doi.org/10.3399/bjgp18X700157
Williamson, C. (2018b). Combining professional and lay knowledge to improve patient care. British Journal of General Practice, 68(666), 39–40. https://doi.org/10.3399/bjgp17X694337
Williamson, C. (2019). The emancipation of patients: A theory whose time has come. British Journal of General Practice, 69(680), 150–151. https://doi.org/10.3399/bjgp19X701741
Wykurz G, Kelly D. (2002). Developing the role of patients as teachers: literature review. BMJ. 12;325(7368):818–21. doi: https://doi.org/10.1136/bmj.325.7368.818
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Kangasjarvi, E., Forsey, J., Simpson, J.S. et al. “We’re back in control of the story and we’re not letting anyone take that away from us”: patient teacher programs as means for patient emancipation. Adv in Health Sci Educ (2023). https://doi.org/10.1007/s10459-023-10255-6
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DOI: https://doi.org/10.1007/s10459-023-10255-6