AcademyHealth’s Post

Great to see my Dad's article on Lyme as a lead editorial in The Times today. I could call it "The malign impact of the myth of data" There is something worse than important institutions such as NICE and the NHS not basing policy, investment and treatment decisions on well curated, reliable and accurate data. This worse thing happens when important institutions dissemble and use semantics to appear as if they base policy and investment decisions on well curated, reliable and accurate data. In this way they harm their users and, in the end, themselves.   In the case of many conditions that don’t lend themselves to double blind clinical trials an NHS data strategy would be improved by an acknowledgement of where they lack data and therefore are unable to be confident in their approach.  In this way, an essential element of a “health data culture” would be to have an open, inquiring and humble mindset that is necessarily patient led – listening to individuals and exploring how to unpack and aggregate “anecdata” in order to understand the scale of a problem, likely treatments and promising research avenues. Instead of this we get, as my father points out eloquently in The Times today, absence of evidence presented as evidence of absence. This is devastating to a community who are already desperately sick. “First, do no harm”; misusing data in this way results in wide-scale, traumatic harm. In the case of Lyme Disease, the consequences at a human level are catastrophic. But switching from my Lyme campaigning hat with Lyme Disease UK to my day job Pivotl its worth considering even in less grave circumstances. Could it be helpful for all organisations to include explicitly, as part of their data strategy, what they don’t know and to describe the humble, open enquiring mindset which should be the Ying with yang of becoming truly data centric? In the meantime, I’m proud of the work Pivotl is going to support the cause of those with invisible illnesses and also to be directly supporting www.teamseasoar.co.uk who are rowing the Atlantic to raise money for Lyme Disease. Jessica Figueras Julia Glidden Honor Paddock Julia Knight Natasha Metcalf John Jones David Newell John Lambert Stacey Keen

In the series of tools, methods and frameworks which will enhance our efficiency in work, today we will talk about the CBSDM. The suggestion for the tool was given by KARTIK PRUSTY sir. I am talking about the gist of the tool, people can read more about this to understand and use the tool. A Community-Based System Dynamics Model (CBSDM) is a powerful tool that blends the sophistication of system dynamics with the inclusive nature of community engagement. Picture it as a virtual laboratory where diverse stakeholders come together to tackle complex social challenges like public health, education, or poverty. Imagine a scenario where a community is struggling with rising obesity rates. Healthcare professionals, educators, policymakers, and residents all have valuable insights and experiences. Here's where CBSDM shines: it provides a platform for everyone to contribute their perspectives and collaboratively design strategies. In this model, variables like diet, exercise, access to healthy food, and socioeconomic factors are interconnected in a web of relationships. Through simulations, stakeholders can visualize how changes in one area ripple through the entire system. For instance, increasing access to nutritious food might lead to improved health outcomes but could also require changes in infrastructure or community education efforts. What makes CBSDM truly impactful is its ability to foster dialogue and consensus. By bringing together diverse voices, it ensures that proposed solutions are holistic, taking into account the complex interplay of factors affecting the community. Through iterative modeling and scenario testing, stakeholders can identify high-leverage interventions and anticipate unintended consequences. Ultimately, CBSDM empowers communities to co-create solutions that are not only effective but also sustainable. By harnessing the collective wisdom of stakeholders and leveraging cutting-edge simulation technology, it offers a transformative approach to addressing today's most pressing social issues. Share or tag people, you think, this tool can be a beneficial tool for them.

Many people, both with and without #Parkinsons, say participating in research is empowering and rewarding. It’s a way to support others and play a unique role in speeding scientific breakthroughs, which simply won’t happen without volunteers. Read The Michael J. Fox Foundation For Parkinson's Research’s latest blog to learn about clinical trials currently open to volunteers.  https://bit.ly/3DE82Id #parkinsons #parkinsonsawareness #parkinsonsresearch #movementdisorders #brainhealth #research #blog #research #updates #clinicalresearch #volunteer  

One of the key successes of our #EDIRA conference was developing a robust approach to #engagment with #diverse and #raredisease #patients and #advocates and #communities by using the #communitiesofpractice approach as a research methodology. Ethical approval from the University of Chester. This enabled us to set a #conference_question, and collate the responses. We will be publishing the report, and producing free learning resources for our community members. Keep checking for updates. We summarised the participant responses in our 'EDIRA - 9 Barriers to Inclusion' infographics: starting with Barrier Number 9: INTERSECTIONALITY! Sam Fillingham Kimberly T. Professor Uzo Iwobi CBE FLSW Ymchwil Prif Wrecsam / Wrexham Uni Research Humie Webbe COUCH Health NIHR BioResource Beacon for Rare Diseases Genetic Alliance UK Lucy McKay Intent Health Genomics Partnership Wales Health and Care Research Wales Elizabeth Davenport Costello Medical Natasha Ratcliffe Dr Heidi Green Chinese Autism UK Dunstan Nicol-Wilson Jo Balfour

Results from "The Final 10%" CF Survey reveal many people have participated in clinical trials in the past and even more are interested in participating in the future. We were particularly moved by 66% of respondents citing the “desire to help the CF community even without a direct benefit” as a main motivation. Talk about altruism! Forever inspired by the courage and solidarity of the amazing #cysticfibrosis community 🙌🏼 Read the full report >> https://bit.ly/3IBwJYf #raredisease #CFresearch #clinicaltrials

Research Doesn’t Have to Be Scary Webinar! Join us on October 31, at 3:30 pm ET, to learn more about the value and necessity of utilizing research data to help build and support program design, advocacy efforts, and funding strategies. The Research Articles Collection (RAC) developers will introduce this database, offering important peer-reviewed publications focused on Aging and Vision Loss, explaining its development, and how to structure searches to achieve effective research results. Open to all and great for anyone who wants to bolster their skills in developing programs, proposals, and other professional development using peer-reviewed research. Learn more and register today at https://lnkd.in/eiNQK-7Z The Research Articles Collection is a collaboration between National Research and Training Center on Blindness and Low Vision, VisionServe Alliance and the Aging & Vision Loss National Coalition (AVLNC). Visit the Research Articles Collection at https://lnkd.in/eJDZ_y48 #blindnessawareness #blindness #LowVision #lowvisionawareness #visionrehabilitation

🏥 Founded by the Sisters of Charity in 1893, St Vincent's Hospital Melbourne is now in its 131st year of services to the community 🏥 St Vinnie, as we affectionately known, has played an integral role in improving the health and wellbeing of Victorians with many milestones including opening Victoria’s first inpatient palliative care unit in 1938, opening Australia’s first Intensive Care Unit in 1961, performing Australia’s first hand transplant in 2011 and many more. 🔬 Innovation and Research is in our DNA. 🏥 Human Research Ethics Committee (HREC) plays an important role of reviewing research proposals that involve human participants to ensure that they meet ethical standards and guidelines. 🏥 Our HREC is crendentialled to provide review and approval for clinical trials (Phase I-IV) for both public and private sites across Australia- including 💊Drugs, 📱Devices, ⚕Diagnostics and 👩💻 Digital (AI/Machine Learning) studies. 🔎🌟 We are recruiting for volunteer lay /community members to join our HREC 🏥Our HREC meets every two weeks (member attends one meeting per month). The position is voluntary with appointment for 12 months with annual extension. ✅ If you are interested or know someone who might be interested please check and share the PD below or PM me. 👍Like, ♻Share ⌨Comment and 🔖Tag a Friend #clinicaltrials #healthcare #clinicalresearch #innovation #ethics #communityengagement #researchmanagement 18.iv.24

𝐉𝐔𝐍𝐄 𝟒 𝐖𝐄𝐁𝐈𝐍𝐀𝐑: The healthcare and research establishment is hard enough to navigate, but when your child is sick, it can be particularly daunting. Cure Mito Foundation is a patient advocacy organization that advances #LeighSyndrome research and supports affected families worldwide. By implementing the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Clinical Research Glossary on their website, they empower families with critical, plain language resources to make informed decisions about the care of their loved ones. Learn more about how to implement this free resource in your patient/participant materials at our June 4 webinar: 𝐀𝐜𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐈𝐧𝐟𝐥𝐮𝐞𝐧𝐜𝐞: 𝐈𝐦𝐩𝐥𝐞𝐦𝐞𝐧𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐆𝐥𝐨𝐬𝐬𝐚𝐫𝐲 𝐚𝐧𝐝 𝐘𝐨𝐮𝐫 𝐑𝐨𝐥𝐞 𝐢𝐧 𝐏𝐮𝐛𝐥𝐢𝐜 𝐑𝐞𝐯𝐢𝐞𝐰. Register here: https://bit.ly/3VmbhOe Sophia Zilber 🌺 is dedicated to supporting and empowering families that #LeighSyndrome impacts. Join us on June 4th as she shares her personal experience and why Cure Mito Foundation includes the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) Center’s Clinical Research Glossary as part of its educational resources. #PatientAdvocacy #LeighSyndrome #HealthcareResources