Healthcare decision making should be democratised
BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n1225 (Published 19 May 2021) Cite this as: BMJ 2021;373:n1225Read our latest coverage of the coronavirus pandemic
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Dear Editor
A COLLECTIVE, COOPERATIVE, CORRECTIVE EFFORT
================================================
The COVID 19 pandemic is affecting the entire humankind in a
historically unprecedented fashion.
We need to inspire ourselves. Urgency is paramount. Whether
inspiration is democratically induced or dictatorially enforced is
immaterial.
Competing interests: No competing interests
Dear Editor
I agree with the authors, wider inputs into our health provision is desirable. However there is one glaring, persistent and unresolved health-promoting issue that stands out above all others.
I have yet to see BMJ invite a feature on the manifold health benefits for those who achieve physiological status of the autocrine and paracrine signal D3, previously demoted to "vitamin". Instead there has been a reliance upon a NICE panel that treats D3 as if it were a drug, admitting only big RCTs for consideration. But D3 is not a drug, it has a 500 million year evolutionary history and hence a defined physiology, all of whcih is sidelined by NICE. Endowing NICE with this monopolistic oracle is not only anti-science it is anti-democratic. And dangerous to health. In winter half the UK population have serum 25(OH)D below 50 nmol/L. The physiological level is 100 to 150 nmol/L. The result is a host of chronic diseases. The figure in this recent review by the scientist-clinician who discovered 1,25(OH)D over 50 years ago shows the breadth of D3's roles:
https://www.mdpi.com/2072-6643/12/7/2097
Democratisation extends to permitting publication of science-based criticism of medical dictats. The US IoM made a factor of ten mathematical error in its dose recommendation for D3, that has not been corrected years later. It is a serious condemnation of the medical establishment that is has failed to democratise discussion of D3, in the pages of BMJ and beyond.
Competing interests: No competing interests
Beyond healthcare decision making being democratised - We need more conferences where patients have the power
Dear Editor
We agree the pandemic has done no favours to patient and public involvement in healthcare. We support the call to strengthen patient and public participation in policy making and research.
Were patients at the last conference you attended - did they play role(s) in the planning and delivery? Was the conference PatientsIncludedTM where some patients were supported to attend and participate (1)? Though including patients at conferences is important, we need more patient-led conferences.
Unlike much of research and healthcare, patient-led conferences give patients the power and control, support, and resources over all aspects. They set the learning agenda.
We were involved in a virtual patient-led conference in September 2023, called “PxP: For Patients, By Patients: Partnering to Make Research Stronger.” PxP was designed for and by patients and was global, accessible, and a catalyst for patient leadership (1, 2). PxP is all about patient engagement (PE) in research—also called patient and public involvement (PPI) or consumer involvement in research. Conferences or sessions on PE in research are not often designed solely for and by patients (3-6).
PxP’s primary audience is patients and open to everyone. PxP is also a hub for patient experience and evidence via its website with videos of conference sessions, summaries of attendees’ chat comments, and literature (7).
As individuals from diverse geographical backgrounds, we share our perspectives on PxP.
From my Steering Committee member perspective (SR), I appreciated how PxP was genuinely co-created with patients. From the first Steering Committee meeting, to the trust from the funder (see below), everything was done inclusively and with mutual respect for everyone’s experiences, backgrounds, expertise, and perspectives.
From a panelist’s perspective (PG), PxP encouraged and motivated me to be better. When you hear some of the solutions others have created, you think “why haven’t I heard or thought of this?”. I hope to see more conferences open doors for patients this way as it acts also as a support group for participants.
From my attendee perspective (OA), the PxP was one of a kind and the first I had seen that focused mainly on patients. The most outstanding part for me was when my co-author, Sara Riggare, with Alex Haagaard and Dana Lewis, spoke about "self research" and how they did experiments with themselves. I am thankful for PxP in bringing together these personalities so that patients like me can be better advocates, partners, and researchers.
As individuals supporting PxP, we offer some thoughts. PxP was a career highlight, supporting a patient-led conference with unique topics (DPR). Being newer to PE in research (HM), the “buzz” around PxP was special. I encourage those working in health research or healthcare to show up and listen to patient-led content.
Capturing PxP’s essence, we say: 1. Patient-led conferences focus on topics that matter to patients; 2. Many topics at PxP resonated globally; and 3. PxP shows that patients are eager to share their experiences and find community. These lessons seem to apply widely—PxP was not specific to one disease or condition and had international scope.
Patient-led conferences need patients and support to happen. The Canadian Institutes of Health Research’s Institute of Musculoskeletal Health and Arthritis provided resources for PxP, while a patient Steering Committee fully designed, hosted, and executed it. PxP has a resource and lessons learned for you about patient-led conferences (8).
Join us at PxP 2024 or at the PxP hub to learn more about PE in research and topics that are patient priorities. PxP represents an idea that is here to stay.
Oluwafemi Ajayi (Chief Executive Officer, ‘Gail Sickle Initiative), Patrick Gee (Founder and Chief Executive Hope Dealer, iAdvocate), Hetty Mulhall (Associate Scientific Director, Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis), Dawn P. Richards (Patient Engagement Consultant, Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis), Sara Riggare (Participatory eHealth and Health Data, Uppsala University, Uppsala, Sweden)
References:
1. PatientsIncluded [webpage]. www.patientsincluded.org [cited 2023 December 6]. Available from: www.patientsincluded.org.
2. PxP: For Patients, By Patients: Partnering to Make Research Stronger [website]. www.pxphub.org [cited 2023 December 6].
3. National Institute for Health and Care Research www.nihr.ac.uk: NIHR; [cited 2023 December 6].
4. About PCORI: Patient-Centered Outcomes Research Institute; [cited 2023 December 6]. Available from: https://www.pcori.org/about/about-pcori.
5. Canadian Institutes of Health Research: Strategy in Patient-Oriented Research [cited 2023 December 6]. Available from: www.cihr-irsc.gc.ca/e/41204.html.
6. Patient Engagement Open Forum [webpage]. https://patientengagementopenforum.org/ [cited 2023 December 6].
7. PxP Resource Hub [website]. https://pxphub.org/resource: PxP; [cited 2023 December 6].
8. Richards D, Mulhall H, Belton J, de Souza S, Flynn T, Haagaard A, et al. Co-creating and hosting PxP: A conference about patient engagement in research for and by patient partners. Preprint. 2024. https://doi.org/10.31219/osf.io/thd8b
Competing interests: No competing interests