#ePatients
November 26, 2024 at 3:44 PM
Using AI for healthcare? I'm hoping to connect Bay Area ePatients using #ChatGPT, #Claude, or #Gemini for medical visits + records. Looking to build a network for patient-led AI use. If you are in Bay Area please DM/reach out. #PatientsUseAI #ePatients #HealthAI #BayArea researchpartner.org/contact
Hugo Campos – Research Partner | Hugo Campos – Patient Advocate & AI Healthcare Strategist
Connect with Hugo Campos to collaborate on patient-centered, equitable healthcare innovations. Reach out via contact form, LinkedIn, or schedule a call.
researchpartner.org
February 2, 2026 at 6:40 PM
‪2/‬

‪"The point is not that science doesn’t matter (it does, very much) but that the path from lived experience to research to care can be bidirectional."‬

‪#PostCovid #PwME‬ #PostCovid19 #CFS #epatient #epatients #chronicillness
February 6, 2026 at 12:01 AM
3/
"most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition."

doi.org/10.31486/toj...

Screenshot from latest Science for ME weekly update

#LongCovid #chronicillness #epatients #MEcfs
October 3, 2025 at 12:46 AM
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
Collaboration is the Best Medicine: Patient-Centered Collaboration Grounded in Caritas® - SPM Blog
What if the most powerful medicine wasn’t a pill, but a team grounded in compassion? Healthcare today is complex. No single clinician can meet every need of a patient navigating […]
participatorymedicine.org
January 6, 2026 at 2:01 PM
RT Scott @Strangely_T1 Will #epatients of the future not be known as say #diabetics but instead by the online community associated w/ #dsma
December 3, 2024 at 1:37 AM
Personal health info:better to have light than curse the darkness: http://www.medpagetoday.com/article.cfm?tbid=32374#.T5_EG1frBoQ.twitter @epatients @farristimimi @katherinekleon @lauraghc
Access Denied
www.medpagetoday.com
November 25, 2024 at 1:49 PM
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
August 26, 2026 at 6:29 PM
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
June 17, 2026 at 4:23 PM
10 things. Great advice for #heart #epatients Not just for #cancer http://cancer101.org/wp-content/uploads/2012/06/top-10.pdf
@WomenHeartOrg @LisaWomenHeart @DrMarthaGulati
404 - CANCER101
404 - CANCER101
cancer101.org
November 24, 2024 at 6:10 PM
I met @vanessacarteramr.bsky.social at HIMSS about 10 years ago. I greatly admire how she has developed from a "helpless, uninformed patient" to a fierce and effective advocate for other patients via her #AntimicrobialResistance advocacy work. #epatients #AMR
Not realising what the term #AntibioticResistance meant, I was a helpless, uninformed patient who couldn't play an equal role

This #WAAW I was grateful to share my story as Chair of the @who.int Task Force of #AMR Survivors

youtu.be/GUw6fRhwt3Y?...

#AntimicrobialResistance
Vanessa’s antimicrobial resistance story (AMR)
YouTube video by World Health Organization (WHO)
youtu.be
December 5, 2024 at 3:10 PM
I think it’s symbiotic: patients shape the technologies as they adopt the technologies. The next evolutions, already begun, are in #genAI and #agenticAI, which #epatients are already began to leverage to help them better understand their health, health records, & to help w/ diagnosis & navigation.
October 19, 2025 at 12:28 PM
Id like both seymour and slimy brown to tell us what exactly do they think the taxpay-earner is?
participatorymedicine.org/epatients/20...
Im sure they know the research/theory since they are both so wunderfool
Are patients knights, knaves, or pawns? - SPM Blog
Sachin Jain and John Rother’s JAMA commentary, “Are Patients Knights, Knaves, or Pawns?” is an article that begs to be shared.  The first time I read it I had to […]
participatorymedicine.org
August 31, 2026 at 2:39 AM
Dave deBronkart, Scoop Sweeney, and I were discussing e-patient uses of AI, something Dave's been investigating, on the Plutopia News Network livestream Thursday. That discussion led to this post, which Dave expects to be the first in a series: participatorymedicine.org/epatients/20...
A patient asks ChatGPT: cardio exercises after hip replacement? - SPM Blog
What happens when one of SPM's founders needs some exercise advice, and asks ChatGPT?
participatorymedicine.org
October 16, 2023 at 1:42 PM
Indeed.

participatorymedicine.org/epatients/20...
"It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines"
"it’s not easy to find untainted experts anymore"
etc
Former NEJM editors on the corruption of American medicine (NY Times) - SPM Blog
This is longer than it might be, because this point is essential. If this subject is familiar to you, skip to the heading “Today’s update.” As we said in December, an e-patient essential is sorting ou...
participatorymedicine.org
September 28, 2024 at 6:11 PM
"The Architect of Trust: Dr Tom Ferguson’s Legacy" restores the history of the e-patient and highlights patient empowerment, participatory medicine, trust and access to health knowledge. #ePatients #PatientEmpowerment #ParticipatoryMedicine
jopm.jmir.org
September 4, 2026 at 8:36 AM
NEW!
Partnering with patients to develop the right tool ->
appropriate metric of physician-patient interaction
#Societyforparticipatorymedicine

participatorymedicine.org/epatients/20...
August 10, 2026 at 3:05 PM
Head of Design for @makevisible someone who knows #a11y #ptengagement #epatients and listening please help them
makevisible.notion.site/Head-of-Desi...
Head of Design | Notion
This is a full-time hybrid role with 2-3 days in our office in Second Home, Spitalfields.
makevisible.notion.site
May 5, 2026 at 4:53 AM
not surprising? -> RT @docweighsin: #Aetna finds consumers aren’t very empowered in health@healthpopuli #epatients

ow.ly/dTIM7
January 7, 2025 at 3:54 PM
JMIR Formative Res: Exploring the Preferences and Behavioral Trends of e-Patients in Psychosomatics Towards Telemedicine During and Post #covid19 Pandemic: Cross-Sectional Analysis #Telemedicine #eHealth #Covid19 #ePatients #HealthCare
Exploring the Preferences and Behavioral Trends of e-Patients in Psychosomatics Towards Telemedicine During and Post #covid19 Pandemic: Cross-Sectional Analysis
Background: #covid19 pandemic resulted in a rapid growth of telemedicine and e-health services, with an increasing number of e-patients utilizing the internet for self-informed decision-making. Objective: Investigations on patient adoption and preferences of telemedicine due to the pandemic are still few. Methods: In a cross-sectional study, 150 adult patients (>18 years) of the psychosomatic outpatient department were invited to complete an ad hoc questionnaire to identify e-patients' preferences related to communication, information-seeking behaviour, subjective explanations, and post-pandemic preferences. Group comparisons and a multiple linear regression were applied using SPSS. Results: The study revealed a slight increase in online-based communication between patients and caregivers, as well as among patient–patient interactions. Significant group differences were observed concerning social media correspondence (χ2¬ = 17.44, p < .001) in regard to patient age and for live video consultations (χ2¬ = 70.17, p < .001) in regard to gender. For both age and gender, significant group differences were found for medical videos (age χ2¬ = 6.36, p = .042; gender χ2¬ = 76.70, p < .001). Age, gender, and preferences for live video consultations were identified as significant predictors (F = 14.195, p < .001, R² = 0.299) explaining patients' future preferences for on-site versus online consultations. Conclusions: Even though a slight increase in online-based communication was detected, a resilience of patient–caregiver and patient–patient communication indicated a relative stability in challenging circumstances. Elderly, and female patients expressed preference for on-site consultations, emphasizing the significance of in-person care. Male patients demonstrated greater openness towards online consultations, indicating the potential for expansion of telemedicine services. Identifying preferences are core essentials for catering for future e-health implementations to diverse patient needs and for designing care offerings. Incorporating these findings can enhance patient engagement and satisfaction in the evolving landscape of e-health services for better healthcare outcomes. Clinical Trial: osf.io/6nm9s
dlvr.it
January 16, 2026 at 6:42 PM
Do #medscape #epatients still exist? Having that experience of being the 44year old in the cardiologist office and thinking of younger days.
April 2, 2025 at 6:11 PM