A toolkit to enhance early medical education through patient engagement Dr Jaimy Saif, David Rogers, Dr Claire Stocker

This toolkit offers practical advice for educators on involving patients in healthcare education. This toolkit is based on best practices, published literature as well as authors experiences of EXPERT BY EXPERIENCE sessions. Each section has a list of key messages, top tips and in some cases, further resources. You may need to adapt the methods described in the toolkit to suit your own teaching requirements.

Target audience: Healthcare educators, curriculum designers, administrators

Section 1: What is expert BY EXPERIENCE session?

In the ever-evolving landscape of healthcare, it has become increasingly clear that medical education extends far beyond textbooks and lectures. To prepare future healthcare professionals for the challenges and complexities of patient care, a transformative approach has emerged—one that recognises the invaluable contributions of experts by experience (EBE). These individuals, who have first-hand experience living with specific medical conditions, offer a unique and essential perspective that textbooks alone cannot provide.

An EBE session is a learning experience where individuals with significant experience in managing their own chronic health conditions engage directly with students. During these sessions, EBEs share their personal stories, insights, and how their illness affects their daily lives.

section 4: planning before you start

Please see below a systematic approach to help plan your EBE sessions.

  1. Define clear learning objectives and align EBE session within the curriculum. For some suggestions, please refer to section 5 of this toolkit.
  2. Check for other related healthcare departments in the University for potential interdepartmental collaboration. For some suggestions, please refer to section 6 of this toolkit.
  3. Select and recruit suitable EBEs: For some suggestions, please refer to section 7 and 8 of this toolkit.
  4. Establish ethical and consent protocols: For some suggestions, please refer to section 9 of this toolkit.
  5. Design the session structure: For some suggestions, please refer to section 10 of this toolkit.
  6. Set up pre-session orientation for students: For some suggestions, please refer to section 11 of this toolkit.
  7. Plan providing training and orientation for EBEs: For some suggestions, please refer to section 12 of this toolkit.
  8. Organise logistics: Arrange the session location or online platform, ensuring accessibility for all participants. Ensure technical setup (microphones, video recording, etc.) is tested if the session will be recorded or live-streamed.
  9. Gather and prepare evaluation materials: Create feedback surveys or questionnaires for students and EBEs to capture their thoughts on the session’s effectiveness.
  10. Identify ways to develop an evaluation method for assessing the session’s impact on student understanding and empathy. For some suggestions, please refer to section 13 of this toolkit.

section 5: aligning EBE sessions with the curriculum

Aligning EBE sessions with the curriculum is crucial to ensure that these sessions complement and enhance the learning objectives and content covered in the program (9, 10). Here are some key points on how to achieve this alignment.

  1. Identify learning objectives: Determine what you want students to gain from these interactions. Ensure that these objectives align with the overall curriculum goals.
  2. Curriculum mapping: Map out the existing curriculum to identify where EBE sessions can fit seamlessly.
  3. Integration into core topics: Embed EBE sessions into core topics or themes covered in the curriculum. Match the expertise and experiences of the patients with the relevant subject matter.
  4. Sequential integration: Introduce them at points in the curriculum where students have sufficient background knowledge to engage meaningfully and when the content aligns with the patient's experiences.
  5. Design session activities: Develop specific session activities that challenge students to apply their clinical knowledge while considering the patient's perspective.
  6. Assessment alignment: Ensure that assessments, reflect the content covered in EBE sessions. Include questions or tasks that require students to integrate patient perspectives into their responses.

Identifying suitable EBE requires careful consideration to ensure that their experiences align with the educational objectives and provide valuable insights to students(12). below are some criteria to help identify suitable ebe:

Recruiting and maintaining diverse group of ebes should involve a thoughtful and inclusive approach. Diverse perspectives enrich the educational experience. some strategies are discussed here.

Ensuring confidentiality and obtaining informed consent are critical ethical considerations when recruiting ebe for involvement in medical education(13). Here are some key points to keep in mind:

UK medical schools currently engage ebe in diverse formats. Below are some examples, along with their respective advantages and limitations

EXamples of online platforms with patient stories

  • https://www.patientvoices.org.uk/find.htm
  • www.thebody.com
  • https://www.nlm.nih.gov/archive/20120918/hmd/breath/breathhome.html (click on ‘interactives’)
  • www.nhs.uk/video/Pages/medialibrary.aspx?Tag=Real%20stories
  • https://www.diabetes.org.uk/your-stories
  • https://www.britishpainsociety.org/people-with-pain/patient-voices-video-resources/
  • https://www.patients-association.org.uk/the-untold-patient-stories-shedding-light-on-the-realities-of-life-with-a-long-term-condition
  • https://www.patients-association.org.uk/blog/how-to-use-patients-experience-of-care-to-improve-services
  • https://storiesforchange.net/

Section 11: Ways to provide pre-session orientation and enhancing student participation

Designing engaging and interactive EBE sessions is essential for enriching medical education and increasing the impact and value of these sessions. Here are some key areas to consider.

  1. Provide pre-session preparation: Assign pre-session readings, videos, or activities to prepare students for the EBE session. This primes students with background knowledge and allows them to come prepared with thoughtful questions and reflections.
  2. Start with the patient story: To Kick off the session, start with a patient story that highlights the topic being discussed. Recognising that some EBEs may find it challenging to recount their stories repeatedly, consider pre-recording the patient narratives at their convenience. These recordings can then be distributed to students prior to the session, enriching live Q&A discussions with more informed and stimulating interactions.
  3. Utilise different storytelling techniques: Incorporate a variety of storytelling techniques to keep students engaged and interested. This could include personal narratives, testimonials, case studies, role-playing scenarios, and interactive storytelling activities. Incorporating multimedia elements such as videos, photos and audio recordings can all bring patient experiences to life. These can all aid in evoking emotions, capturing attention and deepen understanding for students.
  4. Connect storytelling to learning objective: Ensure that storytelling is integrated seamlessly with educational content and aligned with learning objectives. Use patient stories to illustrate key concepts, reinforce learning points, and stimulate critical thinking and reflection.
  5. Provide contextual information: Supplement storytelling with relevant contextual information, background knowledge, and educational content. Help students understand the broader context of the patient's story, including medical terminology, disease processes, treatment options, and healthcare system factors.
  6. Facilitate dialogue: Foster open dialogue and discussion between EBEs and students. Encourage students to ask questions, share their thoughts and reactions, and engage in meaningful conversations with expert patients about their experiences.
  7. Facilitate reflection: Build in time for reflection and debriefing at the end of the session. Encourage students to reflect on the patient stories they've heard, consider the implications for their future practice, and identify lessons learned that they could apply in clinical settings.
  8. Timely feedback: Gather feedback from both students and EBEs about the storytelling experience. Use feedback to evaluate the effectiveness of the session, identify strengths and areas for improvement, and adjust future sessions accordingly.

Section 12: Training and orientation guidelines for EBE

Training and orientation guidelines for EBEs play a vital role in optimising their contributions to EBE sessions in medical schools, ultimately benefiting both patients and students and advancing the goals of patient-centered medical education. Here are some key areas to consider.

  1. Orientation session: Hold an initial orientation session to introduce EBEs to the goals, format, and expectations of the expert patient sessions. Provide an overview of the medical school curriculum, the role of EBEs in the educational process, and the importance of patient-centered care.
  2. Training modules: Develop training modules covering topics such as effective communication skills, confidentiality, and privacy regulations, understanding the student perspective, and providing constructive feedback. These can be developed by collaborating with Learning Development Centre within the University. These modules can be delivered in-person or through online resources.
  3. Feedback mechanisms: Establish feedback mechanisms for EBEs to provide input on their experiences participating in the sessions. Encourage them to share suggestions for improvement and areas where they feel additional support or training is needed.
  4. Cultural sensitivity training: Offer cultural sensitivity training to help EBEs navigate diverse student populations and ensure their experiences are understood and respected by students from different backgrounds.
  5. Supportive environment: Foster a supportive environment where EBEs feel valued, respected, and empowered to contribute to the educational process. Arrange events to recognise and celebrate their contributions to medical education.
  6. Respect for confidentiality: Emphasise the importance of confidentiality and privacy when sharing personal health information or experiences. Clearly communicate the boundaries around what information can be shared during the sessions and how it should be handled.
  7. Consent process: Implement a robust consent process that outlines how EBEs' information will be used and shared during the sessions. Ensure that EBEs understand and consent to their participation, including any recording or dissemination of session materials.
  8. Boundaries on advice giving: Clarify that EBEs are not expected to provide medical advice or treatment recommendations to students. Encourage them to share their experiences and insights while emphasising that medical decision-making remains the responsibility of healthcare professionals.
  9. Self-care and well-being: Encourage EBEs to prioritise their own well-being and self-care throughout their involvement in the sessions. Provide resources and support for managing emotional or psychological challenges that may arise from sharing personal experiences.

Section 13: Ways of evaluating the impact of EBE sessions

It is important to evaluate the impact of the session on student understanding and empathy. Below are some reported ways from the literature.

  1. Summative exam questions: Develop questions in summative exams focused on scenarios involving empathy and patient understanding, which allow students to apply learning from EBE sessions (16).
  2. Pre- and post-session surveys: Implement pre- and post-session surveys measuring changes in empathy using validated tools such as the Jefferson Scale of Empathy. This helps to compare attitudes before and after interaction with EBEs (17).
  3. Reflective journals: Require students to write reflective journals post-session, focusing on how the experience influenced their perspective on patient care and empathy. Using reflective practice has been shown to deepen empathy(18).
  4. OSCE incorporation: Incorporate aspects of patient empathy in Objective Structured Clinical Examinations (OSCEs), where students interact with standardised patients to gauge empathy and interpersonal skills in a controlled environment (19).
  5. Peer assessments: Use peer evaluations where students assess each other’s engagement and sensitivity during group discussions on patient experiences. This approach fosters accountability and reflection, as noted by the General Medical Council (https://www.gmc-uk.org/).
  6. Longitudinal follow-up: Track changes in empathy over time by revisiting empathy scores and reflections several months post-session (16).
References
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  14. Dost S, Hossain A, Shehab M, Abdelwahed A, Al-Nusair LJBo. Perceptions of medical students towards online teaching during the COVID-19 pandemic: a national cross-sectional survey of 2721 UK medical students. 2020;10(11):e042378.
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  16. Winter R, Issa E, Roberts N, Norman RI, Howick JJBo. Assessing the effect of empathy-enhancing interventions in health education and training: a systematic review of randomised controlled trials. 2020;10(9):e036471.
  17. Ferri P, Rovesti S, Padula MS, D’Amico R, Di Lorenzo RJPR, Management B. Effect of expert-patient teaching on empathy in nursing students: a randomized controlled trial. 2019:457-67.
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We thank the expert patients from Silverlining Brain Injury Charity for their time and valuable feedback.
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Jaimy Saif

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