Guidebook

Definition of a patient partner: A patient partner is an individual who collaborates (co-creates) with researchers to provide insights based on their lived experience with a health condition. They offer valuable perspectives on research priorities, study design, implementation and dissemination of any results of a study. 

Importance of patient involvement in research: Patient involvement ensures that research is relevant to those it aims to benefit. It can lead to better recruitment strategies, more appropriate outcome measures, and improved dissemination of results.

Key responsibilities and expectations: These include attending meetings, reviewing documents, providing feedback on study materials, and advocating for patient-partnered approaches. Patient partners are expected to maintain confidentiality and contribute constructively to discussions.

Developing your own patient expertise: Reflect on your personal health journey. Understand how your experiences can inform and enhance the scholar’s project.

Balance personal experience with broader perspectives: While your individual story is important, try to also consider diverse patient experiences beyond your own.

Staying informed about current research practices: Familiarize yourself with basic research concepts, ethics, and methodologies. Ask about workshops or webinars that will help you to learn more about the research process. 

Cultivating empathy and communication skills: Practice active listening. Develop the ability to articulate your experiences clearly. Learn to provide constructive feedback sensitively.

Learn about the specific research area: Read up on the project that has been proposed. While you don't need to be an expert (nor are you expected to be), having foundational knowledge will help you engage more effectively.

Clarify your own motivations and expectations: Reflect on why you want to be involved and what you hope to contribute and gain from the experience. This self-awareness will help you communicate your goals with the scholar.

Identify your strengths: Consider what unique perspectives or skills you bring. Perhaps you have strong communication abilities, experience with support groups, or insights into daily challenges of living with a condition.

Initial introductions and rapport-building: Prepare a brief introduction about yourself and your motivations. Show genuine interest in the researcher's work/project. Find common ground to establish a connection.

Setting clear expectations and boundaries: Discuss your availability, preferred communication methods, and areas where you feel most comfortable contributing. Be clear about what you can and cannot do.

Fostering mutual respect and open communication: Acknowledge the expertise of researchers while asserting the value of your own experiences. Encourage open dialogue and create an environment where all perspectives are valued.

Understanding different stages of clinical research: Familiarize yourself with the typical phases of a study that your scholar is proposing. 

Identifying opportunities for patient input: Recognize key points where patient perspectives can add value, such as in defining research questions, designing recruitment strategies, or selecting outcome measures.

Balancing scientific rigor with patient perspectives: Understand the need for methodological soundness while advocating for patient-friendly approaches. Learn to present patient concerns in ways that align with scientific objectives.

Clarify roles and expectations: Work with your scholar and others on your mentorship team to define your specific responsibilities, time commitment, and how your input will be incorporated.

Active listening techniques: Practice focusing fully on the speaker, avoiding interruptions. Use non-verbal cues to show engagement. Summarize and reflect back what you've heard to ensure understanding.

Articulating patient concerns clearly: Use specific examples from your experience.

Bridging communication gaps between patients and researchers: Act as a translator, helping researchers understand patient perspectives and vice versa. Identify and clarify misunderstandings or assumptions on both sides.

Establish open communication: From the outset, discuss preferred communication methods and frequency. Be proactive in asking questions and sharing your thoughts.

Prepare for meetings: Review agendas and materials in advance. Jot down questions or comments you want to raise.

Share your perspective confidently: Remember, you're there because your input is valued. Don't hesitate to speak up, even if your view differs from other mentors or the scholar.

Promoting inclusivity and diversity in study design: Encourage researchers to consider diverse patient populations. Suggest ways to make studies more accessible to underrepresented groups.

Ensuring patient-friendly language in materials: Review consent forms, surveys, and other patient-facing documents. Suggest simplifications or clarifications where needed.

Addressing potential barriers to participation: Identify practical obstacles patients might face (e.g., transportation, time commitments, etc.) and propose solutions.

Focus on the patient experience:  Always consider how research decisions might affect study participants and the broader patient community.

Offering insights on study protocols: Review protocols from a patient perspective. Highlight areas that might be challenging or burdensome for participants.

Reviewing patient-facing materials: Assess the clarity and appropriateness of recruitment materials, informed consent documents, and patient instructions.

Suggesting improvements for patient engagement: Propose ideas for keeping participants informed and engaged throughout the study. Suggest ways to show appreciation for patient contributions.

Maintaining confidentiality: Understand and adhere to confidentiality agreements. Be cautious about sharing sensitive information, even unintentionally.

Recognizing and addressing potential conflicts of interest: Disclose any relationships or interests that might influence your perspective. Be aware of how your personal experiences might bias your input.

Ensuring informed consent processes are clear and comprehensive: Review consent forms critically. Ensure they clearly explain risks, benefits, and patient rights. Suggest improvements to make the consent process more understandable.

Address power dynamics: Academic settings can feel intimidating. Remember that your lived experience is equally valuable. If you feel your voice isn't being heard, don't hesitate to speak up (or contact Greg, Diana or Cheryl for assistance).

Staying updated on relevant medical advancements: Regularly read reputable health news sources and patient-oriented medical literature.

Attending workshops and conferences: Participate in patient advocacy events, research conferences, and training workshops. These can provide valuable knowledge and networking opportunities. Ask if there are areas that can help you learn and stay up to date.

Build mutual trust and respect: Recognize that both you and the researchers bring valuable expertise to the table. Approach interactions with an open mind and willingness to learn from each other.

Networking with other patient partners and mentors: Share experiences and best practices with other patient partners. Consider finding a mentor for your own development. Greg is happy to help support and brainstorm possible mentors. 

Establishing impact for effective patient partnership: Work with researchers to define what successful patient involvement looks like. This could include measures like improved recruitment rates, reduced dropout rates, or innovative ways to disseminate results to patient communities.

Gathering feedback from investigators and other stakeholders: Encourage regular check-ins to assess the partnership. Be open to constructive criticism and suggestions for improvement.

Reflecting on personal growth and contributions: Keep a journal of your experiences and lessons learned. Regularly assess your own development and the impact you're making on research projects.

Addressing common obstacles in patient-researcher collaborations: These might include communication breakdowns, differing priorities, or feeling undervalued. Develop strategies to address these proactively.

Feeling overwhelmed: The learning curve can be steep. Remember it's okay to take things slowly and ask for support when needed.

Time management: Research projects can be time-consuming. Be realistic about your availability and communicate any constraints clearly.

Emotional impact: Engaging with research related to your condition can sometimes be emotionally taxing. Establish self-care strategies and know it's okay to step back if needed.

Differing opinions: You may not always agree with researchers or other patient partners. Focus on respectful dialogue and finding common ground.

Bureaucratic processes: Research institutions often have complex administrative procedures. Practice patience and ask for guidance when navigating these systems.

Maintaining boundaries: While your personal experiences are valuable, be mindful of sharing only what you're comfortable with. It's okay to keep some aspects of your health journey private.

Strategies for conflict resolution: Learn and apply basic conflict resolution techniques. Practice expressing concerns diplomatically and seeking win-win solutions.

Tailoring guidance to individual needs: Recognize that each mentee/scholar will have different strengths, weaknesses, and goals. Adapt your mentoring style accordingly.

Encouraging independence while providing support: Guide mentees towards finding their own solutions rather than always providing answers. Offer support when needed, but also encourage self-reliance.

Celebrating successes and learning from setbacks: Acknowledge and celebrate both big and small achievements. Help mentees view setbacks as learning opportunities rather than failures.