Society for Participatory Medicine cofounder Jon Lebkowsky posts about health: unshaved.substack.com/p/health

Health

Participatory Medicine and AI for Health

unshaved.substack.com

Every patient journey differs—especially when a rare disease is involved. Attend the Society for Participatory Medicine’s Sept. 19 Patient Journey Conference to learn how together patients, caregivers and clinicians can improve amyloidosis diagnosis and care. participatorymedicine.org/conference/

Participatory Medicine Conferences - Society for Participatory Medicine

The Society of Participatory Medicine hosts regular conferences throughout the year to help empower patients & healthcare professionals. March 20, 2025.

participatorymedicine.org

Patients bring essential expertise to every healthcare journey. Our latest post explores participatory medicine through the cardiac amyloidosis patient journey—and previews our Sept. 19 conference on diagnosis, partnership, and better care. Read more: participatorymedicine.org/epatients/20...

The Patient Journey: Amyloidosis - SPM Blog

Participatory medicine focuses on the e-patient—equipped, enabled, empowered, and engaged. Physicians and healthcare teams bring clinical expertise across a range of diseases and conditions, while pat...

participatorymedicine.org

A story that has long needed to be in the literature - w the first DOI for the "e-Patient White Paper," included as a multimedia attachment. Lead author @amyprice.bsky.social - I helped. GOBS of historical information. @weblogsky.com @drdannysands.bsky.social @susannahrfox.bsky.social

Society for Participatory Medicine@participatorymed.bsky.social · 3w ago

A tribute to Dr. Tom Ferguson's 2007 e-patient white paper. His "equipped, enabled, empowered, engaged" vision shaped participatory medicine — often without attribution, letting the term's meaning drift. This article restores that intellectual genealogy. jopm.jmir.org/2026/1/e97659 #SPM

A tribute to Dr. Tom Ferguson's 2007 e-patient white paper. His "equipped, enabled, empowered, engaged" vision shaped participatory medicine — often without attribution, letting the term's meaning drift. This article restores that intellectual genealogy. jopm.jmir.org/2026/1/e97659 #SPM

Society for Participatory Medicine is proud to announce the second in our series of Patient Journey conferences: The Amyloidosis Patient Journey. www.zeffy.com/en-US/ticket... #participatorymedicine #spm #amyloidosis

Dr. Brenda Merriweather will speak at a Society for Participatory Medicine event about the cardiac amyloidosis patient journey: "We not only need the patient to report on all their symptoms, but we also need the clinician to actively listen to the patient." participatorymedicine.org/conference/

Rare disease patients use GenAI to support research, advocacy, and care preparation—while carefully verifying outputs and relying on clinicians. #GenAI #RareDiseases #DigitalHealth #PatientEmpowerment jopm.jmir.org/2026/1/e93720

Why Patient Stories Matter: One Patient’s Experience of Radiotherapy. www.worldradiotherapy.org/post/why-pat... #WorldHeadAndNeckCancerDay #whncday #radonc #rtt #MedPhys #Radiotherapy #patientexperience

Why Patient Stories Matter: One Patient’s Experience of Radiotherapy

For many people, radiotherapy is something they know very little about until they, or someone close to them, need treatment.Clinical information plays an essential role in helping patients understand ...

worldradiotherapy.org

Danny Sands, cofounder of the Society for Participatory Medicine, is a physician who fully intended to be a magician! #SPM #participatorymedicine www.youtube.com/watch?v=QzA-...

Episode 20: Dr. Danny Sands - The Magician, the Physician, and the Future of Participatory Medicine

YouTube video by North of Patient

youtube.com

“I want physicians to really understand that this can increase their JOY IN PRACTICE and that their patients are going to like this.” If your organization shares in the vision of a better healthcare system that puts relationships at the center, join our coalition: participatorymedicine.org/champ/

@Society for Participatory Medicine founder @Danny Sands talks about the importance of measuring the participatory actions and behaviors of patients and their providers. He looks forward to a day when we can make interventions and show their impact. youtu.be/rULsAgFUWVI?...

Meet Dr. Danny Sands, co-founder of the Society for Participatory Medicine

YouTube video by Society for Participatory Medicine

youtu.be

Making connections in Boston! The World Orphan Drug Congress was a great success for SPM. Seven different people expressed interest in becoming Board Members and a few organizations interested in the CHAMP coalition.

How is CHAMP different from other measures? CHAMP is not another patient satisfaction survey. Read our comparative analysis of patient experience scores. The bottom line, CHAMP is more than what you feel or want. CHAMP is about behaviors. Read more: participatorymedicine.org/epatients/20...

A New Measure for Patient - Physician Interactions - SPM Blog

For more than two decades, the government and healthcare organizations have been using surveys to gauge the effectiveness of patient/caregiver interactions between them and their healthcare providers....

participatorymedicine.org

Why Patient Engagement Technology Has To Function Outside of Visits #HITsm #PatientEngagement https://www.healthcareittoday.com/2026/06/10/why-patient-engagement-technology-has-to-function-outside-of-visits/

Why Patient Engagement Technology Has To Function Outside of Visits | Healthcare IT Today

The following is a guest article by Teddy Aaron, Founder and CEO at Soothe Note, and Brynn Forlizzi, Co-Founder and Head of Patient Experience at Soothe Note Many healthcare technologies focus on the apparent aspects of care. An appointment. An email notification. Lab results. A reminder. Follow-up notes. These aspects play a crucial role in

healthcareittoday.com

Participatory Medicine is when patients shift from being mere passengers to responsible drivers of their health and healthcare professionals encourage and value them as full partners. Patients and providers play a role around these key elements of collaborative healthcare.

Discussion of how AI transforms participatory medicine by giving patients new tools to understand medical research, manage personal health data, challenge institutional failures, and act with greater agency. #participatorymedicine #patientsuseAI plutopia.io/patient-powe...

Patient Power in the Age of AI | Plutopia News Network

How AI transforms participatory medicine by giving patients new tools to understand medical research, manage personal health data, and act with greater agency.

plutopia.io

Racquel Dozier describes core elements of #participatorymedicine in her #patientjourney post. #Communication, #trust, #honesty, & active informed participation are right out of @participatorymed.bsky.social's Manifesto. #S4PM #ParticipationIsTheBestMedicine socialhealthnetwork.com/advocacy/pat...

How Patient Partnership and Collaboration Lead to Better Care

A patient advocate and health leader shares how collaborating in partnership with her healthcare provider has led her to better health outcomes.

socialhealthnetwork.com

We need your help! SPM will have a small but important presence at the upcoming World Orphan Drug Congress. We need representatives at our booth. Contact @ksalemoaks.bsky.social to learn more. You can complimentary passes for full Congress at WODC@participatorymedicine.org #MedSky

Join the World Orphan Drug Congress USA 2026! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies from June 9–11 in Boston. For more info: buff.ly/qjKvjPO #MedSky #OrphanDrugs #RareDisease #PatientAdvocacy

World Orphan Drug Congress USA 2026 | Boston

World Orphan Drug Congress USA is the globally leading event for advancing orphan drug development, market access, and rare disease patient care.

buff.ly

Our goal is to create a valid measure of collaboration between patients and providers. @ksalemoaks.bsky.social sat down with @cait-desroches.bsky.social, PI of SPM's signature project, CHAMP. She explains why measurement is so important in healthcare. Read the interview: buff.ly/QkQPBpr #MedSky

Collaboration is the best medicine! 💯 This is the fundamental belief at @participatorymed.bsky.social But we need data to prove the case. And we are building the team to define and collect those data. Watch this interview to learn how we are attacking the challenge.

Society for Participatory Medicine@participatorymed.bsky.social · 5mo ago

We are thrilled that Cait DesRoches, DrPH, MSc, has been appointed Principal Investigator for SPM's signature initiative: the Collaborative Healthcare Action Measurement Platform (CHAMP). @ksalemoaks.bsky.social sat down with @cait-desroches.bsky.social: buff.ly/EuSzT43 #CHAMPindex #Medsky

We are thrilled that Cait DesRoches, DrPH, MSc, has been appointed Principal Investigator for SPM's signature initiative: the Collaborative Healthcare Action Measurement Platform (CHAMP). @ksalemoaks.bsky.social sat down with @cait-desroches.bsky.social: buff.ly/EuSzT43 #CHAMPindex #Medsky

Meet Cait DesRoches, DrPH, MSc, PI of SPM's CHAMP initiative

We are thrilled that Cait DesRoches, DrPH, MSc, has been appointed Principal Investigator for the Society for Participatory Medicine’s (SPM) signature initiative: the Collaborative Healthcare Action…

youtube.com

Join the World Orphan Drug Congress USA 2026! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies from June 9–11 in Boston. For more info: buff.ly/qjKvjPO #MedSky #OrphanDrugs #RareDisease #PatientAdvocacy

World Orphan Drug Congress USA 2026 | Boston

World Orphan Drug Congress USA is the globally leading event for advancing orphan drug development, market access, and rare disease patient care.

terrapinn.com

Studies continue to confirm that collaboration between patients and providers is still critical. Like MAIT, CHAMP is a measure to gauge the actions, behaviors, and perceptions of patients, caregivers, providers and health systems. Read the full paper on MAIT: www.jmir.org/2019/10/e147...

Reduced Hospitalizations, Emergency Room Visits, and Costs Associated with a Web-Based Health Literacy, Aligned-Incentive Intervention: Mixed Methods Study

Background: The association between health literacy and health care costs, particularly for hospitalizations and emergency room services, has been previously observed. Health information…

jmir.org

@gil-bashe.bsky.social writes about the importance of relationships vs transactions in #healthcare, underscoring the role of #participatorymedicine and #primarycare. This is what @S4PM is studying with CHAMP. participatorymedicine.org/champ/

Champ - Society for Participatory Medicine

participatorymedicine.org

Gil Bashe@gil-bashe.bsky.social · 6mo ago

Health is more than transactions - it’s relationships. When medicine becomes fragmented, we lose continuity and early insight into real illness patterns. My latest for @medikalife.bsky.social explores how transactional care may be jeopardizing our future health. Read: medika.life/how-transact...

What if the most powerful tool in healthcare isn’t tech or protocols, but human connection? Participatory medicine, grounded in Caritas, puts patients at the center as partners building trust, resilience, and healing together.

The Society for Participatory Medicine is needed right now. SPM reminds us that care works best when it’s done with people, not to them. Shared decision-making, patient voice, ethical use of AI, and true partnership aren’t extras. They’re essential to quality, equity, and restoring meaning in care.

Thrilled that my colleague, @cait-desroches.bsky.social will be working with us on this important project!

Society for Participatory Medicine@participatorymed.bsky.social · 6mo ago

@cait-desroches.bsky.social has been named Principal Investigator for the Society for Participatory Medicine’s (SPM) signature project: Collaborative Healthcare Action Measurement Platform (CHAMP). Learn more participatorymedicine.org/champ #HealthcareInnovation #PatientEngagement

@cait-desroches.bsky.social has been named Principal Investigator for the Society for Participatory Medicine’s (SPM) signature project: Collaborative Healthcare Action Measurement Platform (CHAMP). Learn more participatorymedicine.org/champ #HealthcareInnovation #PatientEngagement