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A Beginner's Guide to Patient Research Partners (PRPs) UK

*This guide is designed to be a practical, accessible, and user-friendly resource for anyone

beginning their journey as a Patient Research Partner (PRP)* (c) Mel Brooke 2024

Introduction

Living with a health condition can be challenging, but people with lived experience bring a valuable perspective that can improve research. This guide introduces you to the role of Patient Research Partners (PRPs) in the UK, especially in health areas like musculoskeletal (MSK) and rheumatic diseases. It will explain what PRPs do, how they contribute, and how to get involved if you’re interested.

What is PPIE?

In the UK, Patient and Public Involvement and Engagement (PPIE) is the umbrella term for how the public collaborates with researchers in shaping health research. Here’s what each part means:

- Participation: When patients take part in a study, such as by testing a treatment.

- Engagement: When information about research is shared with the public through events, media, or publications.

- Involvement: When patients actively shape research by providing input on study design, joining committees, or reviewing research documents.

Who Are Patient Research Partners (PRPs)?

PRPs are individuals living with specific health conditions, in this guide we mainly refer to those with MSK and rheumatic diseases like arthritis, fibromyalgia, or lupus—who offer their experiences to improve research. Their insights help researchers consider real-life needs and concerns of people managing these conditions, making studies more relevant and impactful.

What Do PRPs Do?

PRPs can be invited to participate in various stages of research, helping to make projects more patient-centered. Here’s a closer look at common roles PRPs may take on:

1. Providing Insights: Reviewing research proposals to ensure studies address meaningful questions.

2. Research Design: Helping researchers develop patient-centered study designs.

3. Surveys and Focus Groups: Offering feedback on study protocols and patient materials.

4. Lay Reviewing: Making sure study documents are easy for the public to understand.

5. Steering Committees: Serving on research committees to guide projects.

6. Presenting: Sharing experiences and insights at conferences.

7. Co-authorship: Contributing to research papers, adding patient perspectives to findings.

How to Get Involved as a PRP

There are several ways to become a PRP:

- Research Institutions: Reach out to universities or research centers with patient involvement programs.

- Patient Organisations: Many advocacy groups, like the British Psoriatic Arthritis Consortium (Brit-PACT) and PAPAA, help connect patients with researchers.

- Workshops and Training: Some institutions offer training to prepare PRPs for working with research teams.

- Online Platforms: Websites like Learning for Involvement (https://www.learningforinvolvement.org.uk) list PRP opportunities.

- Social Media: Following health organisations on Instagram, X or Facebook can also lead to opportunities.

Resources and Guidelines for PRPs

To support PRPs and researchers, several resources and guidelines are available:

- NIHR: Offers resources for patient reviewers of health research.

- EULAR: Advocates for PRP involvement across Europe, especially in rheumatic disease research.

- GRAPPA: Provides resources and opportunities for PRPs to join working groups on psoriasis and psoriatic arthritis.

- PCORI: US-based organisation with helpful guidelines for patient-centered research.

Links to useful resources:

Example Scenarios for PRP Involvement

Here are a few common examples of PRP contributions:

- Reviewing Documents: a PRP reviews a research summary and suggests simpler

language to make it more patient-friendly.

- Focus Groups: a PRP join a focus group discussion and provides feedback on a new treatment’s accessibility and value to patients.

- Steering Committee: a PRP serves on a steering committee, offering strategic feedback throughout a project life.

- Conference Presentations: a PRP shares their story at a conference, highlighting patient priorities.

Checklist for New PRPs

Here’s a simple checklist of steps to take to help you get started if you’ve been invited to act as a PRP. They are designed to help you feel organised and confident. It’s important to understand things such as what your role will be, setting expectations, clarifying terms, and getting to know the team.

1. Learn About Your Role: Ask what your role is so you understand what will be expected of you.

2. Meet Your Team: Get to know the researchers and other PRPs.

3. Ask Questions: Don’t hesitate to ask for clarity on terms or tasks.

4. Review Confidentiality: Many projects have confidentiality requirements.

5. Clarify Time Commitment: Make sure you understand the project’s timeline and your role in it.

6. Expenses/Reimbursement terms: if you are offered either; ask questions about the process of submitting expenses, how, what you will be paid for, how much and how often (people on any kind of benefit may need to check their tax status around receiving payments)

Example questions for new PRPs to ask their research team

Q: Do I need to prepare anything before meetings?

A: (Typically, you’ll be given materials to review. Don’t worry if you don’t understand everything—ask for help!)

Q: What if I miss a meeting?

A: (Do you need to just let the team know. Researchers do understand that PRPs have other commitments)

Q: How much time should I expect to commit?

A: (The time varies by project, so check with your team early on).

Asking your team to address concerns or uncertainties you might have early on, helps to ease your anxiety and clarify their expectations.

PRP Rights and Responsibilities

On any research projects, you have the right to be heard and respected, having your contributions valued, and to asking for clarification. You will also be agreeing to responsibilities such as respecting confidentiality, being prepared for meetings, and communicating needs.

How to Give Constructive Feedback

PRPs can feel hesitant to give feedback to researchers but it can be done in a constructive, confident and effective way. When giving feedback, try these tips:

- Use “I” Statements: Focus on your perspective (e.g., “I think the document could be simpler…”).

- Balance Positives and Areas for Improvement: Start with a positive, then share constructive points.

- Be Specific: Use examples to help clarify your feedback.

Here are a few examples and tips for handling challenges that new PRPs may face, like understanding complex medical language, time management, or managing emotions when discussing personal health topics.

Understanding technical language: Ask for explanations in plain language.

Feeling overwhelmed by tasks: Set boundaries. If something feels too complex, ask for guidance.

Discussing personal health topics: Only share what you’re comfortable with and remember you can take a break if needed.

Recognising challenges and finding solutions can help you approach situations with more confidence.

Common Challenges and How to Handle Them

"Being a PRP has given me a chance to make a difference. At first, I was nervous, but with support from the team, I now feel confident sharing my perspective." – Alex, PRP

"The research team really listened to my feedback. Knowing my experiences mattered was so rewarding." – Sarah, PRP

Top Tips for New Patient Research Partners

Starting as a Patient Research Partner (PRP) can feel exciting and a bit daunting, especially if you have no clinical or research background. Here are some tips to help you settle into the role and make the most of your involvement:

1. Embrace Your Unique Perspective

Your lived experience is your biggest asset. You don’t need a medical degree to be a valuable PRP. Your insight into what it's like to live with your condition, what treatments have worked or not worked, and the practical challenges you face all add immense value to the research team.

Tip: Don’t be afraid to share your personal experiences—these can often be the most insightful parts of the discussions.

2. Ask Questions – Lots of Them!

Research can sometimes involve complex terms, unfamiliar methods, or technical jargon. Remember, it’s okay to ask for clarification at any time. Asking questions also shows researchers where they may need to explain things more clearly, benefiting other PRPs who might have similar questions.

Tip: Try to ask questions like:

“Can you explain what this term means in simpler terms?”
“Could you show me an example of how this method works?”
“How will this research benefit people like me?”

3. Be Clear About What You’re Comfortable With

If you’re asked to do something unfamiliar, like reviewing a document or joining a workshop, don’t hesitate to ask for guidance. The researchers understand that PRPs come from diverse backgrounds, and they expect to help you get comfortable with new tasks.

Tip: If you’re unsure about something, say:

“I haven’t done this type of review before. Could someone walk me through it?”
“I’d appreciate some examples of how others have contributed to similar tasks.”

4. Set Boundaries and Ask for Help When Needed

It’s easy to feel like you have to say "yes" to every task, but setting boundaries is important. If you’re feeling overwhelmed or think a task is too complex, talk to the research team about it. They can either simplify the task, give you extra support, or reassign it if needed.

Tip: If you’re feeling out of depth, try:

“I’m finding this task a bit challenging—could we discuss it together?”
“I might need some help with this. Is there someone I can reach out to?”

5. Learn the Basics of Research Slowly

No one expects you to become an expert overnight. As you participate in meetings and tasks, you’ll gradually pick up the essentials of research. Many PRP programs offer introductory training, and some even have resources you can use at your own pace.

Tip: Use the resources available:

NIHR Interactive Course for Patient Reviewers: A free course that covers basic research topics in simple language.
EULAR and GRAPPA Resources: These European organisations also provide guides and videos specifically for PRPs.

6. Give Feedback

Research teams appreciate knowing what works well for PRPs and what doesn’t. If there’s something that’s unclear or a process that could be more PRP-friendly, share that feedback. Many teams are eager to adapt their approaches to make the experience better for PRPs.

Tip: Examples of feedback you could give:

“It would be helpful if documents were explained in simpler language.”
“Could we have shorter meetings or summaries sent afterward?”

7. Be Patient with Yourself

Starting out, there’s a lot to learn, and it’s normal to feel a bit unsure. Research is a team effort, and you’re not expected to know everything. The most important thing is your commitment to improving research for people like you—your voice matters and is valued by the entire team.

Tip: Remind yourself that it’s okay to take time to learn. Every small contribution you make adds value to the research.

Becoming a Patient Research Partner can be a rewarding way to impact healthcare research.

Every contribution you make adds value to the project and helps create patient-centered research.

With this guide, you have some tools and resources to make the most of your involvement and bring about positive change.

Enjoy!

How to become a Psoriatic Arthritis Advocate

*This guide is designed to be a user-friendly starting point for anyone

considering a journey as a Psoriatic Arthritis Advocate* (c) Mel Brooke 2025

Becoming a health advocate for psoriatic arthritis is a meaningful way to raise awareness, support others, and influence positive change in the healthcare system. This simple guide is designed to help you craft your story, identify your message, and take practical steps to become an effective advocate.

Step 1: Crafting Your Story

Your personal story is one of the most powerful tools you have as an advocate. Sharing your journey with psoriatic arthritis can inspire others, foster understanding, and create a sense of community.

Personal stories resonate deeply with others, whether they are patients, caregivers, or policymakers. They normalise the challenges of living with psoriatic arthritis and highlight the need for better support and resources. Start by reflecting on your experiences. What challenges have you faced? How has psoriatic arthritis impacted your life? What strategies or treatments have helped you? Use these reflections to create a narrative that is authentic and relatable.

Step 2: Identify Your Message

Once you’ve crafted your story, think about the key message you want to convey. This will depend on your unique goals as an advocate. For example, perhaps you want to raise awareness by helping to share information about the symptoms and challenges of psoriatic arthritis, such as joint pain, stiffness, fatigue and highlight the importance of early diagnosis and treatment. Perhaps you want to advocate for the value of peer support, whether through formal groups or informal networks, to help patients cope with the condition. If you’re passionate about changes to the healthcare systems, perhaps you could focus on advocating for better access to care, funding for research, or improved treatment guidelines.

Step 3: Connect with Others and Build a PsA Community

Advocacy thrives on collaboration and shared experiences. Building a network of like-minded individuals can amplify your voice and create a supportive environment.

You could start by joining online communities. Lots of hosted platforms now offer digital spaces where patients and caregivers can connect, share experiences, and learn from one another. These communities are invaluable for finding support and exchanging ideas.

Formal support groups, whether in-person or virtual, provide a safe space to share your journey and learn from others. Joining a support group can help build a community of like-minded people who understand firsthand the challenges of living with psoriatic arthritis.

Social media platforms are powerful tools for advocacy. You can share your story, raise awareness, and engage with others using hashtags like #PsoriaticArthritis or #PsA. Connecting with others living with psoriatic arthritis can also provide the support you've been looking for.

Step 4: Share Insights in Research (Patient and Public Involvement - PPI)

Patient and Public Involvement (PPI) in research is a growing area where advocates can make a significant impact. By sharing your lived experiences, you can help shape research priorities and improve future outcomes for others with psoriatic arthritis.

(see the Beginners Guide to becoming a Patient Research Partner above this post for more advice)

Step 5: Take Practical Steps to Advocate

Now that you have honed your story and identified the key message you want to deliver, it’s time to take action. Here are some practical steps to get started:

1. Join Advocacy Groups: Connect with organisations like the National Psoriasis Foundation or the Arthritis Foundation. These groups often provide resources, training, and opportunities to participate in advocacy campaigns.

2. Engage on Social Media: Use platforms like Twitter, Instagram, or Facebook to share your story and raise awareness. Patient advocates have successfully used social media to educate and connect with others.

3. Participate in Events: Attend or participate in events such as ‘World Psoriatic Arthritis Day’ to share your experiences and advocate for change. Many of them will have special social media hashtags that you can use.

4. Collaborate with Healthcare Providers: Work with doctors and researchers to improve patient care and treatment options. Sharing your perspective as a patient can help shape more effective healthcare practices.

5. Advocate for Policy Change: Reach out to policymakers to discuss the challenges faced by psoriatic arthritis patients. Share your story to emphasise the importance of funding research and improving access to care.

Step 6: Engage in Policy Advocacy

Advocating for policy changes can help lead to systemic improvements in healthcare access, treatment options, and funding for research.

Work with Advocacy Organisations: Some groups engage with policymakers on issues that matter most to patients, such as treatment access and healthcare costs. Joining their efforts can amplify your impact.

- Share Your Story with Policymakers: Personal stories are powerful tools for influencing policy. By sharing your experiences with treatment access or cost issues, you can help policymakers understand the challenges faced by psoriatic arthritis patients.

- Participate in Advocacy Days: Many organisations host their own advocacy days where patients can meet with legislators to discuss their needs and priorities. These events are excellent opportunities to make your voice heard.

Step 7: Educate and Empower Others

As an advocate, you can play a key role in educating others about psoriatic arthritis and empowering them to take control of their health. You could write a blog, create videos, or social media content to share your knowledge and experiences. You could share guides and resources you find so that others benefit from them too. Sharing your journey and insights with others can help inspire and grow an advocacy movement and ensure that more voices are heard.

Step 8: Stay Committed and Resilient

Advocacy can be challenging, but staying committed to your cause will help you make a lasting impact. Remember to celebrate the small wins and remember that even if you have helped one person it will have had value. Advocacy is a long-term effort, so take time to celebrate victories along the way, whether it's connecting with a new patient or influencing a local policy change. And don’t forget to take care of yourself! Managing psoriatic arthritis while advocating for others can be demanding. Pace and prioritise self-care and seek support for yourself when needed to avoid burnout.

By crafting your story, identifying your message, connecting with others, contributing to research, engaging in policy advocacy, and educating your community, you can become a powerful advocate for psoriatic arthritis. Your efforts will not only raise awareness but also improve the lives of others living with this condition.

Good Luck on our advocacy journey!