Patient Involvement in Health Science Research and Publishing

From the Editors ?? - Topic in Focus ?? - Popular on LinkedIn ?? - Featured ?? - Footnote ??

From the Editors ??

This month, we celebrate National Patient Advocacy Day. In this issue, we discuss the role patients play in health science research and its publication, and why it is important to have their involvement and feedback.

Are you a patient who has engaged with research? What motivated you to get involved? Was it a positive experience and what has been the impact? Let us know in the comments section.?

We hope you enjoy reading as much we enjoyed creating the content.

Your "Beyond Science" Editorial Team ??

Nesrin and Victoria

Topic in Focus ??

Patient and Public Involvement (PPI), also termed patient engagement, refers to research that is conducted ‘with’ or ‘by’ members of the public and patients , working directly with researchers and health professionals. Research funding agencies are increasingly requiring PPI in the design, conduct, and dissemination of health and social care research . Involving patients in research and the publication of findings is increasingly recognized as essential for producing relevant, high-quality, ethical, and impactful healthcare research, which in turn contributes to improved healthcare outcomes.

Why is it important for patients to be involved??

Biomedical research plays a vital role in advancing our understanding of human health. Thus, research aims that are aligned with the needs of patients and that share the results in a language that is understandable to all, may improve the application of research findings and its impact. As healthcare services aim to be more patient-centered, so the importance of patient-engaged research is also growing. Here are some considerations:?

Relevance: Patients bring unique perspectives that help ensure research addresses real-world needs and concerns.?

Quality: Involving patients can improve the design, implementation, and dissemination of research, leading to more robust and applicable results.?

Ethics: Engaging patients respects their right to be active participants in research that affects their lives.?

Trust and Transparency: Patient involvement can build trust between researchers and the community, promoting transparency and accountability.?

Improved Outcomes: Research that incorporates patient input often results in findings that are more likely to be implemented and to improve patient outcomes.?

How are patients involved??

Patients can serve on advisory boards and steering committees to provide input on study design, methodologies, and relevance. They can also be part of grant review panels, ensuring that proposals are meaningful and relevant. Some patients work as co-researchers, collecting data, engaging with participants, and providing feedback on preliminary findings. Patients can also be co-authors of research commentaries and lay summaries or plain language summaries, which make the research more accessible to a broader audience. They also help design and validate tools to measure health outcomes. These are just some of the way patients engage with research.?

Challenges and considerations?

Given that some patients may not have a scientific background, it is crucial to provide them with the necessary training and support to effectively contribute to research activities. It may be necessary to manage potential conflicts between patient roles as researchers and subjects as well as strive to include a diverse patient representation to avoid bias and ensure comprehensive perspectives. Patients should also be fairly compensated for their time and contributions.?

Conclusion?

By integrating patient perspectives throughout the research process, the scientific community can ensure that studies are aligned with the actual needs and preferences of the people they aim to serve. When done well, the involvement of patients in research and research publishing not only improves the quality of research but also contributes to patient empowerment, which in turn can lead to improved healthcare outcomes.?

Popular on LinkedIn ??

• Lisbeth Oxholm Snede wrote a step-by-step guide for patient and carer involvement in research and projects.?
• Dr Maeve O' Connell referenced an article in the BMJ highlighting the importance of involving patients as editors and reviewers to ensure that research questions, methodologies, and outcomes are aligned with patients’ health concerns.??
• Emma Sutcliffe wrote on the importance and value to research of patient-generated data .??
• Danielle Drachmann reflected on the profound and often overlooked experiences of those directly involved in unfunded patient-led research .?
• Ellie Collins wrote that pharmaceutical companies are working with patients to co-create impactful publications that highlight the needs and insights of patients.??
• Steven Bourke shared a video about how clinical trial investigators can work with patients.?
• Vijay Wadhawan wrote about transitioning from a ‘patient-centric’ to a ‘human-centric’ perspective for those that want to conduct research with patients.?
• Laia Bisbal Arnal reflected on EUPATI and the success of the WECAN Academy 2024 where over 100 patient advocates from around the world gathered to learn and develop their knowledge of patient engagement and advocacy.?
• Karen Woolley , and several Envison Pharma Group members, shared a post about a recent publication on the role of patients in medical research publications.??

Featured ??

In the second episode of People & Science Live, the conversation with Clinical Nutritionist and Patient Advocate Nicky Greenhalgh, and host?Francesca Brazzarotto , detailed Nicky’s personal story and journey as a patient with non-Hodgkin's lymphoma, and what led to her current passion to help others. Watch now and learn more about her experience as a patient being involved in clinical trials and publishing, including the Fast Facts book for patients on Follicular Lymphoma.

In this webcast with Fierce Pharma , ‘Patient-Centered or Patient-Driven? Exploring New Ways of Patient Collaboration’ the growing significance and value of co-creation in healthcare education and patient information resources was explored. Speakers Robert Perry , Heather Gorse , Catherine Richards Golini , and Paul Lavender ?provided valuable insights for representatives from the world of patient advocacy, nonprofit patient organizations, industry partners, and medical publishing about best practices and the value of co-creation that brings all stakeholders together.??

Robert Perry , a former soldier, and police officer, was diagnosed with Waldenstr?m macroglobulinemia (WM), a rare blood cancer in 2015. This led to his work as a patient advocate and Patient Support Manager at WMUK (Waldenstrom's macroglobulinaemia UK) . Watch the interview to learn more about his personal healing journey.

Footnote ??

Read more about the application of PPI with this comprehensive list of practical resources for young investigators.?

Check out this toolbox of education resources for the public on clinical trials and drug development.

Find out more about patient authorship of medical research publications in this paper.

Explore Fast Facts: free medical information resources as handbooks, podcasts, videos, and CME-accredited e-learning courses for healthcare professionals and patients in a variety of disease areas.