Hanna Stegared-Pace’s Post

Why shouldn’t evidence published in medical journals include the insights from those most affected by that evidence? No reason at all. Here’s to all the pioneering #PatientAuthors and their co-authors. You are changing the world of publication ecosystem. This FREE publication summarizes the latest evidence to guide patient authorship. #ISPEP

Advocacy for policy change: Patients as the architects in building the foundation of new era in research. In trials, the weight carried by patients has been a persistent challenge, a burden endured for decades. The journey towards alleviating this burden is an arduous one, yet within the struggle lies an opportunity for profound change. Advocacy emerges as the catalyst for this transformation, a force urging us to rethink policies and champion a patient-centric paradigm. The road ahead may be long, but with unwavering advocacy, we can reshape the landscape of clinical trials. Ehere hope intertwines with scientific progress, there lies a hidden burden carried by the very individuals who are the key to unlocking breakthrough treatments.   Patients participating in clinical trials bear a weight that is often overshadowed by the pursuit of medical advancements. It is this burden of patients that inspires disruption of the industry norms.   Witnessing the trials and tribulations of patients firsthand, I became acutely aware of the profound impact that their participation in clinical trials can have on their lives. It became evident that the burden they bear needed to be addressed, acknowledged, and mitigated.   Clinical trials, with their rigorous procedures and challenging requirements, undoubtedly hold the potential for significant scientific breakthroughs. However, amid the pursuit of advancement, it is essential to recognize that patients are not mere subjects but individuals with dreams, fears, and aspirations. Their commitment to participating in these trials comes at a cost – a cost that extends beyond the physical realm. The burden of patients encompasses a myriad of challenges that patients grapple with throughout the course of clinical trials. Physical burdens manifest in the form of invasive procedures, uncomfortable side effects, and the toll taken on the body and overall well-being.  The need for change resonates through time, a call demanding our attention and action. Advocacy becomes our beacon, guiding us towards a future where patients navigate trials with empathy and support. The milestones we seek, though seemingly distant, are achievable through persistent effort. The time for change is now, and with each advocacy endeavor, we dismantle the barriers that have persisted for too long. In unity, we discover strength – a collective force propelling us towards a future where patient burden is replaced by compassion and progress. #PatientAdvocacyRevolution #EmpowerPatientsInTrials #ChangeClinicalTrials #AdvocateForPatientWellbeing #TransformTrialExperience #EndPatientBurden

What are the pros and cons of participating in clinical research? Read about them below. --- #clinicaltrials #clinicalresearch #patientadvocacy https://lnkd.in/gpmiqHwf

Calling all Mito Researchers! If you're looking to include the patient voice in your research project, look no further! Our Expert Patient Input Committee (EPIC for short) is made up of mito patients and their families and carers keen to share their experiences to help shape research, clinical care and treatments. EPIC can help you identify research priorities, design patient-facing documents, give input on protocol design and much more. For more info, visit our website or contact katie@thelilyfoundation.org.uk #mitochondrialdisease #mito #research #patientinput #patientvoice #thelilyfoundation #engagemnent

Are you patient INTEGRATED or just patient centred? I had an incredible time at Patients As Partners in Clinical Research Community News EU 2024. It was great to meet so many passionate people and hear the work they’re doing to advocate for patients in pharma. My main takeaway was that it’s not enough to be patient-centric. The patient perspective should be heard and acknowledged at each step of design and delivery. This is the key to producing meaningful work and outcomes. What can this look like? 1. Sending regular emails to research participants to update them on progress and share relevant news/ insights 2. Having internal patient boards that you consult on a regular, longitudinal basis 3. Have a mindset to give and not take from patients. Patients are people first and we must always remember that! Above all, we must remember to ‘mind the gap’, in the words of Xoli Belgrave . Consider barriers to participation, particularly those from under-served groups. #patientsaspartnerseu24 #patientvoice #patientadvocacy

𝐖𝐞 𝐜𝐚𝐧 𝐩𝐫𝐨𝐯𝐢𝐝𝐞 𝐲𝐨𝐮 𝐰𝐢𝐭𝐡 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐟𝐞𝐞𝐝𝐛𝐚𝐜𝐤! 📣 The NHS has introduced new Quality Standards and Design Review Principles, a significant shift from optional to mandatory patient involvement. All patient-facing materials must undergo real patient reviews before receiving ethics committee approval. We can help you with receive the needed review from patients. Patient centricity is at the heart of what we do at James Lind Care, which is why we are primed to help pharma companies ensure they are ready for the new changes in the UK. With all patient facing material like ICF and questionnaires needing to be patient-reviewed to pass through the EC committee, the process in the UK is now more patient-centered than ever. Ensuring you have access to relevant patients and medical professionals to help guide the process is key to combatting costly delays and ensuring your EC material is living up to expectations. Follow our CIO, Henrik Vincentz to learn more about the update from NHS and what it means for your clinical trial. #PatientFeedback #ClinicalTrials

How valuable would it be to have real patients provide feedback and ask questions? This is precisely the role @James Lind Care plays. Patients are presented with materials, and their insights are gathered to enhance the clarity, relevance, and patient-friendliness of the content. I see patient input as not just a checkbox but a fundamental aspect of improving communication in clinical research. #PatientFeedback #clinicalresearch #JamesLindCare

There are no excuses! Patient Organisations are eager to be involved in research since early stages and ensure the patient voice is included throughout. They are doing a lot on their side to ensure this happens. If you are working with any asset for Mitochondrial Diseases, check this out 👇🏽👇🏽👇🏽 #patientadvocacy #patientengagement

Organization Spotlight: Trial Equity 🤝⁠ Trial Equity Addressing the underrepresentation of diverse populations in clinical trials, ultimately advancing health equity.⁠ ⁠ Trial Equity’s mission is focused not only on recruiting diverse patients but also on increasing diversity among the clinicians involved in clinical trials. ⁠ ⁠ The company offers a learning course designed for clinical research professionals, focusing on cultural sensitivity and effective communication when engaging potential participants.⁠ ⁠ 🔗 Learn more about Trial Equity's mission and how you can get involved on The Know Rare Blog: https://lnkd.in/gCR7Ruef ⁠ Otis Johnson, PhD, MPA -⁠ ⁠ #TrialEquity #raredisease #rarediseaseawareness #clinicaltrials #clinicaltrial #rarediseaseadvocacy #KnowRare