PxP

🎬 Relive the insights from PxP 2024 Day 3, Session 3: Learning about different types of recognition for patient partners With Jack Nunn, Kimberly Strain, Kwanele Asante, and Sarah Lukeman Whether you missed out on joining us live, or would like to watch the session back, you can do so here: https://lnkd.in/gPXYEfHD On a global scale, but also within research teams themselves, people need to navigate different preferences and rules to ensure adequate recognition is offered. This may look and feel different for different patient partners, and in different places around the world. For example, there may be a range of supports, including monetary and non-monetary options, and different approaches to meaningfully acknowledge the contributions of patient partners. #PPI #PatientEngagement #ConsumerInvolvement

📹 The recording for PxP 2024 Day 3, Session 2 is now available: Highlighting other types of (often non-academic) patient partnerships With Ella Balasa, Thelma Barber, Zachariah Miles, and Runcie C.W. Chidebe Whether you missed out on joining us live, or would like to watch the session back, you can do so here: https://lnkd.in/g5xqAbyP This session will allow for a deep dive into the "how" and "why" behind patient partners who are involved on different kinds of teams - often outside of academic spaces. Through personal narratives, attendees can gain insights, spark creativity, and foster collaborative thinking toward new avenues of patient engagement on all kinds of teams. #PPI #PatientEngagement #ConsumerInvolvement

🎤 Recording from PxP 2024 Day 3, Session 1 is now live: Publishing as (and with) patient partners With Harry Iles-Mann, Nidhi Swarup, Sophia Walker, and Clare Ardern Whether you missed out on joining us live, or would like to watch the session back, you can do so here: https://lnkd.in/gmN4WT8k The session on publishing as (and with) patient partners will follow, and will focus on the variety of involvement of patients in research publications, such as serving on editorial boards or as reviewers, and how this is highly beneficial. By exploring the experiences and perspectives of patient partners in these roles, participants can gain insights into enhancing patient-centered research and amplifying patient voices in academic settings. Engaging with the panel will provide valuable guidance on fostering meaningful collaborations between all members of the research team. #PPI #PatientEngagement #ConsumerInvolvement

🎥 Catch the recording of #PxP24 Day 2, Session 3: Bringing new voices to research and building diversity. With Oluwafemi Ajayi, Patricia de Luca, Stephanie Paravan, and Raissa Amany Whether you missed out on joining us live, or would like to watch the session back, you can do so here: https://lnkd.in/g2bWwj6a Discussions will centre on increasing capacity and diversity in patient partner spaces including the importance of representation, inclusion, and equitable access to health research and healthcare resources. This may involve sharing personal experiences and exploring strategies for creating more inclusive environments. The discussion will also explore the role patients themselves on research teams can play/have in helping other patient partners build up their own skills or bringing other diverse perspectives to the team. #PatientEngagement #PPI #PatientPartnership

#patientengagement conference tips… Are you partnering with someone with a chronic health condition or energy limiting condition? Perhaps someone with #longcovid who experiences post-exertion malaise? Are you travelling together to co-present? 1) Check in with your partner frequently and make space for plenty of breaks. 2) Plan a back up for co-presenting if they end up in a flare and can’t attend. A laptop from bed is still co-presenting. 3) Do your own homework when it comes to accessibility. Not all planners give this a robust lens. 4) Check in with them when they get home. They know they’re planning for a recovery when they get home. This can help a person feel seen. 5) Make very open space for communication and the potential for correction. You may mess up on occasion. Offer yourself some self-forgiveness and correct your course. Not every partner knows they are allowed to speak up as well. So sometimes it’s worth just saying it aloud so you’re both on the same page. Life runs slower when you have a chronic illness. Being seen for who someone is matters and promotes belonging.

📽️ Recording available from #PxP24 Day 2, Session 2: Navigating difficult experiences when patient engagement doesn't go as hoped With Michael Falcon, Nichole Jefferson, Sally Crowe, and Thomas Smith Whether you missed out on joining us live, or would like to watch the session back, you can do so here: https://lnkd.in/gSn83nVw There is a critical need for support systems for patient partners when things go wrong on a research team. To start to address this gap, this session will focus on equipping patient partners with tools for navigating difficult experiences, fostering resilience, and building networks for mutual support. By providing practical strategies and creating a safe space for sharing experiences, we hope that PxP can cultivate a stronger community for patient partners. #PPI #PatientEngagement #ConsumerInvolvement

"A society is a group of people living together in a way that is organized by certain accepted ways of thinking and of doing things, called norms. These norms affect people differently. People who are harmed or excluded by a society’s norms are called marginalized or oppressed. Some norms affect people’s health. These are called social determinants of health. People who are marginalized tend to experience social determinants of health that make them sicker, both physically and mentally." Check out the latest blog on PxP Hub to learn more about social determinants of health and the real-world impact on the author's physical and mental health over the past year. 👉https://lnkd.in/gbi8fMTt With huge thanks to Alex Haagaard for this powerful blog. 💜Please consider sharing with people in your network who think about health research. #PatientEngagement #HealthResearch #SocialDeterminantsOfHealth

🎬 #PxP24 recording: Exploring some of the ethics of patient partnership in research With Isabel Jordan, Jim Elliott, Vina Mohabir, and Simone Uwan Watch here: https://lnkd.in/ghnY5N3c The session on embracing the 'lived experience' part of your identity will follow, and will provide a brief overview of research ethics, clarifying between research ethics relating to research participants versus patient partners. The session will largely focus ethics with respect to patient engagement in research. The discussion will centre on ethical practices and principles that you should expect as a patient partner on a research team.

I wrote a thing for PxP about why health research needs to get better - like WAY better - at addressing social determinants of health. Tl;dr we tend to talk about structural problems in broad strokes and gloss over their material, personal consequences - while at the same time pretending to address those structural problems by implementing wholly inadequate, individual-level solutions #healthequity #healthresearch #servicedesign

Missed it live? Catch the recording of PxP 2024 Day 1, Session 3: Taking care as a patient partner With Christopher Munt MBE, Shyamsundar Muthuramalingam, Ph.D., and Rae Martens Watch back here: https://lnkd.in/giuGeSzN   By appropriately taking care of themselves and others, members of the research team can help to protect against some of the unanticipated aspects of patient partnership like trauma and burnout. It is important to recognise these challenges in the research system, and how different layers of care (self, collective and structural) are important to consider. This session may also explore what to do if you are experiencing burnout, and how or when to step away from an opportunity that you feel may be causing you harm. #PPI #PatientEngagement #ConsumerInvolvement