University of Rhode Island - College of Pharmacy’s Post

I believe the best opportunity to incorporate the patient voice into medical decision-making is at the clinical trial design phase of product development. That's because the outcomes (endpoints) measured and evaluated (based on patient-set expectations for thresholds and tolerance for risk) using patient preferences can be incorporated into the regulatory decision. All other decisions after that (whether a payer will pay, whether a physician will prescribe, whether a patient will accept) are influenced by the data generated by the clinical study. I walked through how this works in this interview. #preferexpertsnetwork #patientvoice #pharmaceuticals

👇🏽 Fantastic piece by Doris Duke Foundation's Sindy Escobar Alvarez & Sam Gill titled "Medicine Means More Than Molecules," which spotlights learnings from their own historical funding patterns, including a tough but important recognition that while their approach undoubtedly advanced valuable science, it also sidelined research critical to understanding how best to implement health services and treatments. They outline some important ways funders and academic institutions can promote research that boosts health and well-being including: 1) Organize funding around pressing health problems rather than career trajectories 2) Increase prizes, awards, and other honors attached to research for prevention and care implementation 3) More actively facilitate innovations that improve health outcomes and increase visibility/regard for work that improves care and disease prevention.

We have made 19 recommendations for system-wide action to help improve the way health and social care research is carried out. The recommendations aim to improve the experience of people taking part in research. Read more about the recommendations in our People-Centred Clinical Research report below. #PeopleCentredClinicalResearch #Research #ClinicalTrials #NHS

📊 Really interesting survey results from CISCRP's 2023 Perceptions & Insights Study about global trends in public and patient attitudes about, and experience with, clinical research. Some key takeaways: 🩺 Most people prefer to learn about clinical research from their doctors, indicating a gap in the actual sources of information. 💻 The majority of those who heard about a clinical research study in the past six months learned about it online, with social media as the primary resource. 📰 A gap exists between where people prefer to learn about clinical research and the actual sources of their information. Full report here 👉 https://lnkd.in/e_xnyJVm #clinicalresearch #clinicaltrials #patientcentricity

The significance of negative results often tends to be overlooked in #clinicalresearch, however, negative results of #clinicaltrials can have a role in enhancing the generalizability of research findings. Learn more about the value of negative outcomes: https://bit.ly/3S6D6I1

What was your favorite thing about #ISPORAnnual? Check out this video compilation from AJMC - The American Journal of Managed Care with KOL responses to that question, and share your own answer in the comments!

Check out the first episode of our new series #TulaneMedInsider! I'm excited to start putting these videos out regularly on the first Monday of each month. Tulane University School of Medicine

This article is worth the time. Everything about this article sets the tone for what clinical research should aspire to in 2024, as achieved by Genentech and outlined within the article by Quita Beeler Highsmith, MBA. As a clinician, I have always believed our healthcare system does not have to be a monolith when it comes to health disparities and inequities, especially in the presence of science-bending feats that anyone willing (and clinically fit) should have access to and the opportunity to participate in should they choose. The data is very clear on the fact that when we engage diverse populations about clinical trials, enrollment rates are similar to non-diverse candidates. The data is also clear that diverse patients are not engaged at equal measure as their counterparts, often due to implicit, and sadly, in some cases, explicit bias. As such, it is incumbent that those working toward bridging the disparities gap observed in healthcare and trial research continue to keep our foot on the gas. Great strides are being made and will continue to do so with sustained effort and commitment.

"𝐸𝑛𝑔𝑎𝑔𝑖𝑛𝑔 𝑤𝑖𝑡ℎ 𝑝𝑎𝑡𝑖𝑒𝑛𝑡 𝑔𝑟𝑜𝑢𝑝𝑠 𝑐𝑎𝑛 𝑏𝑒 𝑏𝑒𝑛𝑒𝑓𝑖𝑐𝑖𝑎𝑙 𝑡𝑜 𝑟𝑒𝑠𝑒𝑎𝑟𝑐ℎ 𝑜𝑟𝑔𝑎𝑛𝑖𝑠𝑎𝑡𝑖𝑜𝑛𝑠, 𝑎𝑛𝑑 𝑐𝑜𝑛𝑛𝑒𝑐𝑡𝑖𝑜𝑛 𝑎𝑛𝑑 𝑐𝑜𝑙𝑙𝑎𝑏𝑜𝑟𝑎𝑡𝑖𝑜𝑛 𝑐𝑎𝑛 𝑢𝑙𝑡𝑖𝑚𝑎𝑡𝑒𝑙𝑦 𝑖𝑚𝑝𝑟𝑜𝑣𝑒 𝑜𝑢𝑡𝑐𝑜𝑚𝑒𝑠 𝑎𝑛𝑑 𝑏𝑒𝑛𝑒𝑓𝑖𝑡 ℎ𝑢𝑚𝑎𝑛 ℎ𝑒𝑎𝑙𝑡ℎ. 𝑇ℎ𝑒 𝑓𝑢𝑡𝑢𝑟𝑒 𝑜𝑓 𝑟𝑒𝑠𝑒𝑎𝑟𝑐ℎ 𝑙𝑖𝑒𝑠 𝑖𝑛 𝑏𝑟𝑒𝑎𝑘𝑖𝑛𝑔 𝑑𝑜𝑤𝑛 𝑡ℎ𝑒 𝑏𝑎𝑟𝑟𝑖𝑒𝑟𝑠 𝑎𝑛𝑑 𝑒𝑛𝑔𝑎𝑔𝑖𝑛𝑔 𝑝𝑎𝑡𝑖𝑒𝑛𝑡𝑠 𝑡𝑜 ℎ𝑒𝑙𝑝 𝑤𝑖𝑡ℎ 𝑟𝑒𝑠𝑒𝑎𝑟𝑐ℎ." This article was inspired by some incredible researchers who have been motivated to improve patient understanding of research, and actively involve them in the development of new research. Written for Rare Revolution magazine, who I absolutely love creating articles for - you can read more here: https://lnkd.in/e_bwy-3y #rarerevolution #clinicalresearch #patientcentricresearch #trialdesign @RareRevolutionMagazine

In case you were wondering what the PMD Foundation Natural History Study is… The Natural History Study, in partnership with Children’s Hospital of Philadelphia (CHOP) and other leukodystrophy-focused clinicians and researchers, is a research project actively working to collect robust data on individuals with PMD. Why is this Study so important? This all goes back to the FDA and clinical trial readiness. New therapeutic approaches for PMD will need to be tested in clinical trials and be approved by the FDA. Researchers need to understand the natural history of PMD (how it progresses over time) before they can design clinical trials to test whether these therapies are safe and effective for use in the patient population. We are looking for more families to complete this survey. Visit our website to learn more. https://lnkd.in/gbKVcgRa