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...

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/

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...

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...

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 [email protected] #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

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.

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

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

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...

@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/

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!

@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

We BELIEVE collaboration is the best medicine. Science demands DATA that can be followed, tested, and analyzed. CHAMP (Collaborative Healthcare Action Measurement Platform) is the mechanism for collecting those data. Learn more at participatorymedicine.org/champ/ #Medsky

OpenNotes turned clinical notes into a patient-facing product. With Drs. Vanka & Stern, I dug into how “noncompliant/denies” can encode bias, and why AI scribes don’t absolve us: you still own the words. Teach this like a clinical skill. #MedSky buff.ly/qFYLWaa

How happy are you with the decisions your medical professional makes for you? Learn about CHAMP, the Collaborative Healthcare Action Measurement Platform, an initiative we've been developing over the past year. Timeline continued in the comments. #Medsky #PatientExperience

Shared clinical decision making was devised to help patients & their doctors make choices when the answer isn't clear cut. People who devised the approach fear it's being hijacked to undermine decades of study supporting #vaccines, @ericboodman.bsky.social writes. www.statnews.com/2026/01/20/s...

Did you know that we offer travel awards for conferences? Here's how: 1️⃣ Become a member of SPM 2️⃣ Apply for the travel award 3️⃣ Follow-up with either a blog post or five social media posts Read more: lnkd.in/eZCP5xP2 Example blog: wp.me/p8S1TQ-61e #Medsky @dcunha77.bsky.social @grohol.com

Collaboration could be the best medicine when caregiving for a loved one. Eric has learned a lot since his wife’s illness, and wanted to share some ways to think about caregiving as a loving and mutually beneficial collaboration between yourself and one you are caring for.

“My first mistake was talking instead of listening. I should have slowed down. I should have given them the time and space to explain their thought process. I should have given myself the time to empathize with their perspective.” @statnews.com #MedSky #ParticipatoryMedicine buff.ly/WZ2dhj5

The best medicine includes the patient as a collaborator. S4PM Board member, Darlene Cunha explains the key role nurses and their training play. participatorymedicine.org/epatients/20... #MedSky #nursesareprofessional #nursing #caritas

I was thrilled to represent the Society for Participatory Medicine @s4pm.bsky.social at the December @everylifeorg.bsky.social Community Congress. In return for some help with the travel costs, I wrote a short blog. Did you you know SPM offers travel awards to their members? wp.me/p8S1TQ-61e

Collaboration could be the best medicine when caregiving for a loved one. Eric has learned a lot since his wife’s illness, and wanted to share some ways to think about caregiving as a loving and mutually beneficial collaboration between yourself and one you are caring for.

“My first mistake was talking instead of listening. I should have slowed down. I should have given them the time and space to explain their thought process. I should have given myself the time to empathize with their perspective.” @statnews.com #MedSky #ParticipatoryMedicine buff.ly/WZ2dhj5

The best medicine includes the patient as a collaborator. S4PM Board member, Darlene Cunha explains the key role nurses and their training play. participatorymedicine.org/epatients/20... #MedSky #nursesareprofessional #nursing #caritas

Look out for more from us in 2026 about our CHAMP initiative! We are developing a Collaborative Healthcare Action Measurement Platform (CHAMP) to rigorously and consistently measure the actions, behaviors, and perceptions of patients (consumers), providers, and health systems over time. #MedSky

Nurses notice the subtle clues that save lives. In the upcoming documentary, SICKLE, @Society for Participatory Medicine Board Member Dr. Brenda Merriweather discusses how she assesses patients through their unique body language. #sicklecellmatters #ASH2025 #SPM #MedSky

Nurses are people you can talk to. Healthcare providers talk to them in medical terms. Patients and families talk to them in practical terms. Nurses are critical to collaborative healthcare…and they are good at it too! #nursesareprofessional #ParticipatoryMedicine #PatientEngagement #MedSky

At Society for Participatory Medicine, we know AI is redefining patients and healthcare providers interactions. In October, @drdannysands.bsky.social moderated a panel of forward thinkers to discuss HOW AI is impacting these relationships: www.youtube.com/watch?v=DeT5... #MedSky #PatientsUseAI

Nurses play a critical role in connecting patients and providers. During COVID, nurses were the ones who spoke with the families AND physicians. #nursesareprofessional #MedSky #ParticipatoryMedicine #PatientEngagement #CollaborativeHealthcare #SPM

Have you heard the latest episode of Raising Rare yet? @medsky.social #participatorymedicine @s4pm.bsky.social @globalgenes.bsky.social @everylifeorg.bsky.social #rarediseases #mentalhealth www.raisingrare.fm/episodes/rar...

Society for Participatory Medicine (a U.S.-based non-profit organization that promotes a model in which patients, caregivers, clinicians, researchers, payers and other stakeholders collaborate as partners in care) moves to Bluesky (7.177 followers on X) Bluesky: @s4pm.bsky.social

Collaboration is the best medicine. Patients and providers working together leads to better outcomes. Nurses are critical to connecting with patients. They listen. They translate. They advise. They keep two-way communication flowing. #nursesareprofessional

At @s4pm.bsky.social Collaboration is the Best Medicine. Nurses are integral to our vision of healthcare where patients and families are considered equal partners on the care team. Nurses get it! They are trained to notice the subtle changes that could be important. #nursesareprofessionals

Join us Mar 20 at The Multiple Sclerosis Patient Journey: From New Diagnosis to Engagement. Engage w #patients, #caregivers, #healthcare professionals, & others; learn importance of #participatorymedicine in MS. Keynotes @healthhats.bsky.social & Ursela Baber. www.eventbrite.com/e/the-ms-pat...