Patient perspectives play an invaluable role in continuing medical education, offering unique insights that enrich the learning experience. Patients and their caregivers have a pivotal role in education by drawing on their real-life experiences in clinical settings to highlight key factors that affect their roles as patients, caregivers, and family members. Their stories enhance the relevance of the educational content, fostering a more patient-centered approach to care and treatment. 

Patient perspectives can be shared by any individual with lived experience, including patients themselves, or those closely involved in their care, such as spouses, parents, caregivers, friends, and family members.

The inclusion of patient perspectives in education:

1. Addresses Practice Gaps: Patient perspectives can provide valuable information on areas where providers may have gaps in practice. By understanding the patient experience, providers can better tailor their care to meet the needs of the patient.
2. Enhances Treatment Approaches and Empathy: Listening to patients discuss their experiences with different treatment and management approaches can help providers make more informed decisions and personalize treatment plans. Patient perspectives also foster empathy, cultural competence, and patient-centered practices among the healthcare team.
3. Promotes Shared Decision Making: Understanding the preferences, values, and concerns of patients and their support team allows providers to collaborate more effectively with patients, supporting informed decision-making in their care.
4. Addresses Barriers to Healthcare and Disparities: Patient and caregiver perspectives help providers identify and address the barriers and challenges that patients face in accessing care, improving overall equity in healthcare delivery.

Studies have shown that including patient perspectives in educational programs can improve provider-patient communication, increase patient satisfaction, and lead to improved health outcomes. Patients’ expertise and first-hand experiences with their health, illness, or disability make their contributions to teaching, assessment, and curriculum development invaluable (Towle et al., 2010). Engaging patients as partners in medical educational meetings offers substantial benefits and their involvement in health policy, clinical care, and research is crucial. Patient participation in medical conferences can spark innovation, expand research agendas, and lead to collaborative efforts in healthcare design, education, research, and clinical care improvements (Chu et al., 2016). 

The Stanford Center for Continuing Medical Education conducted an analysis of post-activity evaluations for its Spinal Muscular Atrophy educational activities, including both live sessions and enduring materials. The findings highlighted that integrating patient perspectives into continuing medical education promotes a more patient-centered approach to care planning.  By incorporating the patient voice into these programs, the learning experience is enriched, and knowledge dissemination is enhanced. The post-activity survey, completed by fifty learners, consisted of 44% physical therapists, 18% physicians, and 12% occupational therapists. Seventy-eight percent of respondents reported that the inclusion of patient speakers and panelists significantly improved their understanding of patient perspectives.  Furthermore, 80% indicated that the personal stories and experiences shared by the patient played a vital role in improving the quality of care processes.  Significant efforts were made to ensure the inclusion of patient perspectives participants was an enriching, respectful and accommodating experience (Manche et al., 2024).

Additionally, the Accreditation Council for Continuing Medical Education (ACCME) and Joint Accreditation for Interprofessional Continuing Education recognize the importance of including patient perspectives in medical education and have integrated patient perspectives into their accreditation criteria. This effort supports the initiative to help healthcare providers deliver patient-centered care by prioritizing patient experiences and evidence-based practices in clinical decision-making.  More information about the accreditation criteria can be found below.

• ACCME Accreditation with Commendation
• Joint Accreditation Commendation Criteria

As you begin planning your educational activity, consider how patient perspectives can support the activity’s goals and objectives. 

• Identify specific ways to integrate patient perspectives, such as:
  • A member of the planning committee. Patients can contribute to designing the curriculum, identifying and selecting topic areas, creating the agenda, reviewing materials, and overall activity planning.
  • A speaker or panelist. Patients can engage directly with the learners in various formats, such as, didactic presentations, case discussions, or panel sessions. They may demonstrate techniques or the use of devices, participate in role-play scenarios and provide feedback based on their lived experiences.

Review the activity’s budget to ensure there are sufficient funds to cover potential expenses. Take into account any organization-specific guidelines for reimbursements or compensation.

• For live, in-person participation, potential expenses may include travel or mileage reimbursements, lodging (for out-of-area participants), meals, parking fees, honoraria, and caregiver costs.

• For livestream or pre-recorded video sessions, potential expenses may include camera or audio equipment, as well as any compensation or honoraria.

Initiating discussions about patient involvement early is essential to securing support for integrating patient perspectives into the educational activity. It’s also important to identify stakeholders responsible for recruiting and selecting patient participants, facilitating communication with patients, managing logistics, and overseeing other related tasks.

When including patient participants as speakers or panelists, consider how you want them to engage with learners.

• Determine the format of the patient perspectives session, weighing options such as live vs. pre-recorded sessions. 

• Decide whether they will participate as panelists, contribute to case discussions, present on a specific topic, engage in role-play, or demonstrate techniques.

When recruiting potential speakers, consider the following steps:

• Start small: Begin by engaging with one or two potential participants.

• Leverage your network: Work with your planning committee members and healthcare providers in your department who interact with patients in clinics to identify suitable candidates.

• Attend patient groups and support meetings: Connect with patient and disease advocacy groups for potential speaker referrals.

• Broaden your outreach: Distribute notices or flyers in clinics and hospitals to reach a broader patient community.

When selecting potential speakers, consider the following:

• Prioritize local speakers: For in-person events, prioritize speakers who reside near the activity venue to minimize the travel burden.

• Seek strong communicators: Look for speakers who are articulate, engaging, and comfortable with public speaking.

• Ensure diversity and inclusion:

  • Include speakers from different age groups - such as both pediatric and adult patients. 

  • Involve individuals at various disease stages or expressions, where applicable, to offer a well-rounded perspective.

  • Promote inclusivity by engaging participants from diverse genders, socioeconomic backgrounds, and cultural perspectives.

To ensure that participants feel comfortable, foster an inclusive and safe environment by demonstrating empathy and understanding, offering support, and treating everyone with respect.  Specific strategies include:

• Ask for each participant’s preferred name and pronouns.
• Encourage them to share their thoughts and experiences to promote a patient-centered approach to care and treatment.
• Listen attentively without interrupting.
   

To prioritize the well-being of patient speakers during in-person sessions, consider implementing mask requirements. Alternatively, explore virtual options, such as live streaming or pre-recorded sessions.

Create a safe and supportive environment for patient speakers throughout the process. Emphasize that they are free to decline participation in any activity that feels uncomfortable and they can opt-out at any point.  Finally, ensure that faculty and planners avoid creating a perception of mandatory participation, and regularly check-in with your patient participants to assess their comfort levels.

Identify and designate a planning committee member or staff liaison to serve as the primary contact for patient participants. The liaison’s responsibilities include building a rapport with the patient speakers, answering questions, offering support, and resolving any issues.

Based on the activity format, ensure comprehensive ADA accommodations and provisions. Consider providing the following, as applicable:

• Accessible parking: Reserve parking spots close to the venue.

• Stage access: Provide ramp access and handrails for stage stairs.

• Adaptive equipment: Utilize adjustable microphones and other adaptable equipment.

• Adjustable seating: Arrange for seating that can be adjusted to accommodate individual needs.

• Wheelchair accessibility: Designate spaces for wheelchair-accessible seating.

• Interpretation services: Offer interpreters or sign language translation services.

• Assistive devices: Supply assistive listening devices and visual aids for individuals who are hearing or visually impaired. Arrange for captioning services during livestream as needed.

• Accessible restrooms: Ensure that restrooms are fully accessible.

• Barrier-free venue: Ensure the venue is free of physical obstacles that could impede mobility.

• Dietary accommodations: Address specific dietary needs.

• Scheduling considerations: Where possible, schedule patient perspectives sessions on a weekend to minimize disruptions to school or work schedules and reduce commute times.

To effectively prepare your speakers:

• Outline the expected time commitment, taking into consideration travel time (if applicable), preparation, and session duration.

• Provide public speaking guidance, which can build the speaker’s comfort and confidence.

• Encourage speakers to share their stories and experiences, focusing on aspects of their care that impacted their quality of life. Promote sharing both positive and negative experiences to provide a holistic view.

• Pair new speakers with a mentor, such as a past or experienced patient speaker, for additional support.

• Remind speakers they are free to skip any questions or activities that make them uncomfortable and can opt out at any point.

• Prepare speakers according to the format of the patient perspectives session:

  • Panel Discussion/ Interview Readiness: In advance of the activity, share a list of potential questions or an outline of topics. For added support, offer an optional Q&A preparation meeting with the moderator.
  • Presentation and Didactic Support: Clearly outline the key topics the speaker should cover. Offer to review their presentation slides and provide suggestions and feedback. For added support, arrange a rehearsal session.
  • Audience Q&A (if any) Preparation: If learners will have an opportunity to ask questions, discuss how this will be managed and work with the speaker to anticipate potential questions and prepare responses. Offer role-playing to boost readiness.
  • Device/Technique Demonstration: Clearly communicate the demonstration expectations to the speaker. Work with the speaker to anticipate potential audience questions and develop appropriate responses. Arrange a practice session to provide them with a chance to practice and refine their demonstration.

Once a patient consents to participate, they will need to complete some essential consent forms and attestations. This is a key moment to build trust. If you haven’t already done so, take this opportunity to confirm their preferred name and pronouns to ensure respectful communication.

Inform participants of their privacy rights under the Health Insurance Portability and Accountability Act (HIPAA). Under HIPAA, patients may serve as faculty or planners in educational activities as long as they provide their consent. Set clear expectations regarding any confidential patient information that will be shared during or after the activity, including any future use of recorded content. Remind patient participants not to disclose protected health or confidential information about other patients. Be sure that this is thoroughly communicated and understood.

Identify and adhere to any institutional policies and practices for safeguarding confidential and private information when involving patient participants.  At Stanford University, the following policies and practices apply:

1. Stanford's secure email service should be utilized for all correspondence with patient participants. 
2. Adhere to guidelines for safeguarding the privacy and security of protected health information (PHI): https://privacy.stanford.edu/

Consider the necessary institution-specific documentation for patient perspective participants. At Stanford University, the CME Office will provide the following documents in advance of the activity. Aim to consolidate all documents into a single form to minimize administrative tasks for the participants.

1. Authorization to Use and Disclose Personal Information: this document outlines the use and disclosure of personal or confidential information specifically for the purposes of the educational activity.
2. Financial Disclosure and CME Attestation Forms
3. Photo/Video Release
4. Consent for the future use of the recording for educational or other purposes (if applicable).  It’s important to let the speakers know the plans for the recording and obtain their separate permission for the future use of the recording.  

Verify any additional institution-specific requirements if minor participants are involved. At Stanford University, the parent/guardian will complete the forms on behalf of a minor participant.

Show gratitude and acknowledge the patient participants for sharing their knowledge and personal narratives. Their insights bring depth and perspective to the activity.

To express gratitude for their participation, consider the following gestures:

• Publicly recognize their contributions during or after the event.
• Provide a certificate acknowledging their role.
• Offer complimentary attendance to the activity. 
• Write a personal thank you note or card.
• Consider a small honorarium or gift card as a token of appreciation.

After the activity, organize a debrief session or distribute a short survey to gather feedback from patient participants. This allows them to reflect on their experience. Consider asking the following questions:

• Did you feel adequately prepared for your role?
• Would you be willing to participate again as a patient perspectives participant?
• What suggestions do you have for improving future patient involvement in educational activities?
• How comfortable did you feel sharing your perspectives and stories during the activity?
• Did you feel that your input was valued and respected by the learners?
   

In the post-activity survey for learners, collect feedback from providers regarding the patient perspectives sessions. Include questions such as:

• Did the patient perspectives session(s) enhance your understanding of the patient experience?
• Do you feel better equipped to meet the needs and priorities of your patients?
• How did patient stories and experiences influence your approach to improving care processes?.
• What specific insights from the patient perspective session(s) could directly impact your practice?