
Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn.
I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra credit if you can share how they have had an impact on the public conversation, treatment of a condition, device innovation, etc. And yes, this is part of the research I’m doing for my upcoming book.
- Body Politic is a queer feminist wellness collective that became a wellspring of insights and research related to COVID-19 and Long Covid: https://www.wearebodypolitic.com
- Design With Us was co-founded by a teen with a limb difference and her mother to create opportunities for disabled young people to learn design and manufacturing skills: https://www.designwithus.org
- The Dinner Party helps grieving young adults (20s to early 40s) connect with each other for support. The platform screens, trains and supports peer hosts to convene groups of people with similar experiences: https://www.thedinnerparty.org
- Disability at Home is a collection of adaptations that people with disabilities and caregivers in the U.S. use to make the world more accessible: https://www.disabilityathome.org
- Equip is an eating disorder recovery company that I advise. Their at-home care delivery includes trained peer mentors for both the patient and their family members: https://equip.health
- Grapevine Health works with Black and Latinx health care providers to tailor health messages for their communities: https://www.grapevinehealth.com
- Genetic Alliance offers training, education, community engagement, and research services to individuals, families, and patient groups: https://geneticalliance.org
- Hive Networks, another company I am proud to advise, builds online collaborative workspaces for clinicians, researchers, and patients: https://www.hivenetworks.com
- I AM ALS is a patient-led movement centered on ALS but with a wider target: Helping everyone to participate in organizing for change. Their playbook: https://organizingplaybook.org
- InquisitHealth is a mentoring-as-a-service company that connects trained peers with people who are living with chronic conditions: https://www.inquisithealth.com
- Mental Health America’s Center for Peer Support provides training and certification for people who want to use their lived experience to help others: https://www.mhanational.org/center-peer-support
- Patient Innovation features medical and assistive device inventions and adaptations from around the world: https://patient-innovation.com
- Patient Led Research Collaborative is a group of people living with Long Covid who rigorously and openly pursue answers to questions related to post-viral illness: https://patientresearchcovid19.com
- Peers for Progress provides consulting and collaboration services to researchers, community organizations, and health care systems: http://peersforprogress.org
- Periwinkle is a peer-to-peer community and resource for perimenopause (the stage right before menopause, which is characterized by the cessation of menstrual cycles): https://helloperiwinkle.com
- Savvy Co-op helps people use their personal experiences to improve health care delivery and innovation: https://www.savvy.coop
- We Are Not Waiting is a community of patient-led activists calling for an end to the innovation bottleneck related to diabetes devices: https://wearenotwaiting.org
Your turn! Please add to this list in the comments below.
NAMI Miami-Dade County (NAMIMiami.org) and its national organization NAMI (NAMI.org)
NAMI provides support, education, advocacy, and public awareness so that all individuals and families affected by or that may be affected by a mental health issue can build better lives.
Thank you! Fantastic addition.
From the About us section: “NAMI was founded in Madison, Wisconsin by Harriet Shetler and Beverly Young. The two women both had sons diagnosed with schizophrenia, and “were tired of being blamed for their sons’ mental illness”. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health led to the formation of the National Alliance for the Mentally Ill in 1979. In 1997, the legal name was changed to the acronym, NAMI.”
Accelerated Cure Project and in particular, its iConquerMS people-powered research network (PPRN) (https://iconquerms.org/).
Purpose of iConquerMS: To improve health, healthcare, and quality of life for people affected by multiple sclerosis (MS) by connecting those with MS, care partners, clinicians, and researchers, and to work together to accelerate innovation, research, and the application of new knowledge.
Vision: People affected by MS are driving new ways of conceiving, designing, conducting, and disseminating MS research that centers on their needs and results in significant improvements in their health and quality of life.
I think there are many PCORI (Patient-Centered Outcomes Research Institute) funded PPRNs that would fit your criteria.
Thanks, Sara! Great addition.
Without taking anything away from the work done by PCORI, I’m interested in initiatives that are led by patients, caregivers, and other people with lived experience.
(Edited to add: What PCORI projects fit that description? And if anyone reading this thinks my criteria are too narrow, please push back. I love learning from our community and welcome debate & conversation.)
Hi Susannah,
Yes, my point wasn’t to highlight PCORI as an entity but to highlight lived experience-led people-powered research networks that they have funded. Possibly AR Power, the PRIDE Network, the ABOUT Network — these might meet your criteria (which I don’t think is too narrow).
Thanks, I’ll look those up!
Pictal health – patient-curated health history timelines for better communication, coordination and collaboration.
Hooray! And yes, great example of a patient-led org 🙂
The Light Collective: https://lightcollective.org/ “There are good and bad types of health data sharing in healthcare technology. Let’s bolster the good kind and protect from the bad kind.”
Thanks for adding — and can’t wait for their guide to come out so other organizations can benefit from their wisdom and experience.
Mental health support with the peer-to-peer model. https://www.7cups.com/
“Connects you to caring listeners for free emotional support. Anyone who wants to talk about whatever is on their mind can quickly reach out to a trained, compassionate listener through our network. We have hundreds of listeners who come from all walks of life and have diverse experiences.”
Beautiful. Thank you!
Susanna – take a look at Global Parents for Eczema Research. https://www.parentsforeczemaresearch.com/work
GPER does patient led research and publishes extensively. This year alone GPER will be published in 15 peer review publications!
Thanks, Lynda, I had not heard of this organization. Very cool!
Please do include AA (Alcoholics Anonymous)—peers helping peers since 1935.
And I hope you will acknowledge the other 12-Step groups run by non-professionals, as well.
Great call out, Diane. I am absolutely honoring the patient-led organizations who pioneered this work. Here’s one version of a historic timeline that I’m using in an upcoming talk:
1935: Alcoholics Anonymous
1948: Fountain House – people with serious mental illness
1953: Narcotics Anonymous
1956: La Leche League – peer mentoring for breastfeeding
1963: Weight Watchers
1970: Boston Women’s Health Book Collective
1971: Black Panther Party’s peer-led sickle-cell anemia screening initiative
1972: Berkeley Center for Independent Living – people with disabilities
1983: MHP Salud – peer health promotion among farmworkers
1983: Denver Principles – people with AIDS demanded fair treatment
1992: ACT UP (the AIDS Coalition to Unleash Power) – therapies for HIV
We stand on the shoulders of these giants of peer-to-peer health innovation and advocacy.
Promise Resource Network is 100% led and operated by suicide attempt, overdose, psychiatric, substance use, formerly incarcerated and formerly homeless survivors who use their shared experience to support others going through similar experiences to heal from trauma and reclaim an identity not rooted in illness. They also launched a statewide effort called Peer Voice NC, to mobilize people with lived experience to strategize policy and practice change around mental health
Thank you, this is an excellent addition to the list. Thank you for doing this work!
People on LinkedIn shared the following suggestions (reposting here because this blog is my outboard memory – note that I haven’t vetted all of these):
IBDRelief – “a for-purpose digital healthcare agency for IBD. Our mission is to improve the lives of people around the world affected by inflammatory bowel diseases like Crohn’s disease and colitis. We are led by patients, creating solutions for patients.”
https://www.ibdrelief.com
American Sleep Apnea Association – “we are an organization of, by, and for sleep apnea patients.” They provide peer mentors, support groups, and subsidized or donated equipment like CPAP machines.
https://www.sleephealth.org
International Children’s Advisory Network (iCAN) – “we bring together kids from around the world who have had a medical diagnosis, be it rare or chronic or acute. We find that even though two youth don’t have the exact same condition – it doesn’t matter – they all know they are going through similar things. They have an instant camaraderie.”
https://www.icanresearch.org
ZealCare “offers personalized health plans, 1-1 coaching, screening for social/life needs, and coach-led peer group support to individuals living with complex chronic conditions. After four months, peer groups are then led by a peer leader selected by group participants and the coach takes a back seat.”
https://www.linkedin.com/company/zealcareinc/
Sins Invalid – “the collective that most shaped the disability justice movement and therefore the public dialogue around disability justice — with the disability justice framework itself as the innovation.”
https://www.sinsinvalid.org/mission
Patient Information Forum (PIF) “represents more than 300 organisations across the NHS, voluntary, academic, freelance and commercial sectors. Our expert guidance on the production of high-quality health information supports an improved healthcare experience for patients and the public.”
https://pifonline.org.uk
Again, thank you for sharing these orgs with me — let’s keep the conversation going!
Another suggestion from LinkedIn, ported over for posterity:
Cancer Hope Network – one-on-one peer support for adult cancer patients and their loved ones. They have been matching support volunteers and patients/caregivers for over 40 years. Support is offered from diagnosis , through treatment and during survivorship.
https://cancerhopenetwork.org/
Copying over my comment from LinkedIn as well; hope the book research is going well! I included a short primer on disability justice in this week’s newsletter; sharing here in case it’s helpful. https://thecopperapothecary.substack.com/p/crip-time-is-soft-and-tender
Neil Seeman asked a good question on LinkedIn: “Do you know of a comprehensive suite/ repository of patient-led innovations — specific for mental health –across a very broad range of perspectives/ age cohorts/ diverse stakeholders? What I see is quite fragmented.”
My answer: “No, I personally don’t know of such a resource. One reason I still like to blog is to create opportunities for people to crowdsource & build on each other’s ideas in the comments section. Here’s hoping that a repository exists and someone will tell us about it!”
So — anyone?
Alzheimer’s Society – innovation team!
https://www.alzheimers.org.uk/research/our-research/practical-guide-designing-products-services-people-affected-dementia
Since this blog is my outboard memory, here’s another patient-led organization to add to the list:
The Chrysalis Initiative
https://thechrysalisinitiative.org
An article about their work as breast cancer patient navigators:
https://connects.ctti-clinicaltrials.org/show/46
I’m also collecting examples of how clinician- and researcher-led organizations incorporate patients in their work. For example, in the UK, the NHS provides “briefing notes” on public involvement in health and social care research:
https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371
The NHS put their strategy to work in their design of the HEAL-COVID trial:
“While public involvement in research can sometimes be treated as less of a priority than other activities when time is limited, this was not the case in the HEAL-COVID trial. The trial was set up rapidly, like other COVID-19 research, but the team prioritised the involvement of patients and the public throughout its design and implementation. They allocated a clear budget for it, knowing that this would be vital to the study’s success.”
Full story:
https://www.nihr.ac.uk/documents/case-studies/theres-always-time-to-work-with-patients-patient-and-public-involvement-during-the-rapid-development-of-a-long-covid-treatment-trial/31819
I would add the Patient Revolution
https://patientrevolution.org/
From their website:
Our vision for the future is one in which healthcare is careful and kind. Careful and kind patient care is care that is safe, makes use of the best available evidence and is prepared to grapple with the uncertainty which underlies clinical knowledge and recommendations. It is care that strives to see patients as individual people, including their history, their aspirations, and their strengths and limitations in light of their struggles. It is care that unites patients, caregivers and clinicians as partners working through health situations to find the best course of action for this person, at this moment in time.
FasterCures, a division of the Milken Institute, recently published “The Current Landscape of the Science of Patient Input.”
From the intro:
“In the US, the Food and Drug Administration (FDA) has provided the regulatory impetus and guidance for patient engagement activities, bolstered by legislation that calls for greater involvement of patients in research, development, and delivery of medical products. The FDA Safety and Innovation Act (FDASIA), recent iterations of the Prescription Drug User Fee Act (PDUFA), and the 21st Century Cures Act all contain specific provisions and recommendations around patient engagement, patient data, and patient-focused drug development. Nonprofit organizations have also been instrumental in developing tools and resources to fill in knowledge gaps, and patient advocacy organizations have served as bridges between patient communities and industry.”
Further in:
“Many research organizations are making strides to integrate meaningful patient engagement into the R&D continuum. Wide dissemination of both successes and failures in engaging patients in research activities would create a more efficient R&D ecosystem, where less-resourced research organizations could apply the learnings of their peers in designing their own engagement efforts. However, some organizations may view their patient-engagement efforts as a competitive advantage when successful or as harmful to brand or investment prospects when delays in research progression or regulatory failures occur, thus setting up an environment that is not conducive to sharing.” (emphasis added by me)
The 25-page report by Henrietta Awo Osei-Anto and Raymond Puerini is an excellent round-up of what I’d call patient-CENTERED initiatives and leads me to think that we need to create a companion landscape analysis of patient-LED tools and projects. Right now the patient-led work is included as a subset and I crave a separate report so we can all track progress as we go forward.
I highly recommend reading the report if you are interested in this topic.
Here’s a link to the PDF:
https://milkeninstitute.org/sites/default/files/2022-11/Current_Landscape_Patient_Input_Milken_Institute_0.pdf
Members of the Patient-led Research Collaborative have been getting some wonderful recognition recently, such as Hannah Davis being named among TIME’s list of 100 rising stars from across industries and around the world and Lisa McCorkell being named among Nature’s 10 people who helped shape science in 2022.
Nature’s write-up captures the PLRC’s accomplishments:
“Last year, the group published a landmark report that documented more than 200 symptoms. Members of the collaborative have served on advisory boards for long-COVID research projects, including the US National Institutes of Healths’ $1-billion Researching COVID to Enhance Recovery (RECOVER) initiative…This year, the collaborative began to distribute the $4.8 million it was awarded by Balvi, a fund established by cryptocurrency entrepreneur Vitalik Buterin to support high-impact COVID projects. Among the study topics are post-exertional malaise and microclots.”
And all this while prioritizing their own & their colleagues’ health, designing their work stream to allow for rest and recovery.
I also loved reading a story by Isabella Cueto about the “Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes.”
One excerpt:
“The medical gaslighting she endured as a patient? Now, it’s material for her work in the lab of Russell Norris at the Department of Regenerative Medicine and Cell Biology at the Medical University of South Carolina. For four years, [Cortney] Gensemer has helped pry open DNA from people with her same illness to figure out what gene variants might be responsible.
She is one of a generation of young patient-researchers, mostly women, who have hEDS and are studying the disease — its genetic sources, the way connective tissues break down, how modern diagnostic tools are failing patients, and which might be more effective, and more. They are redefining what the study of chronic disease can look like by smudging the line between patient and researcher, channeling their experiences into determined, careful science. They are showing that patient-led inquiries could be indispensable in the effort to crack complex, long-misunderstood illnesses, like hEDS.” (emphasis added by me)
See:
https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/
Friends,
First, if you are following comments for this post: Thank you! The conversation is never over. I’d love to keep hearing from people who have questions and suggestions.
Second, I created a new page that captures a version of the list we have all been working on. See what you think:
https://susannahfox.com/patient-led-innovation/
Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by people living with ALS, My ALS Decision ToolTM and guides. https://lesturnerals.org/als-decision-tools-guides-and-webinars/. This first of its kind online interactive tool helps people living with ALS make complex medical decisions. This is an expanding program and we are rolling out a new module shortly.
Thank you! I’m very happy to know about your work and will add it to the list.
Ravel Health
We are a patient-founded Lyme and tickborne disease start-up that provides affordable, on-demand care from vetted Lyme-literate practitioners, all from the comfort of home.
We’re launching our pilot in CO in September and then will be expanding into other states shortly thereafter.
Thank you! Adding now.
For those following at home, here’s the site: Ravel Health
Susannah — For the past four years I have been working at Insulet, which makes a line of innovative tubeless insulin pumps, leading the compliance and privacy teams. The company’s origin story goes back over twenty years to a father’s napkin sketch of an insulin pump that could help his child manage Type 1 diabetes better than alternative technologies. Our flagship product today is a cloud-connected patch-pump-based automated insulin delivery system integrated with a continuous glucose monitor. It’s an extraordinarily mission-driven company that has grown up quite a bit since those early days. https://www.insulet.com/about-insulet/history
That’s awesome! Thank you, David.
12 Health- Michael Seres
Exostent – The amazing PEARS aortic wrap invented by Marfan patient Tal Golesworthy
Thank you!!
I added Exstent (makers of the device invented by Tal Golesworthy) and I’m hoping to confirm that Michael’s company — or at least the ostom-i sensor — is still in existence: https://www.11health.com/ostom-i/
For those tuning in, here’s a link to my growing list of companies and organizations founded or led by patients, survivors, and caregivers:
https://susannahfox.com/patient-led-innovation/
Got another one – AskEllyn.ai by double mastectomy patient Ellyn . Caveat: the website is glitzy and heavily promotional but the service is 100% free.
Thank you, yes! AskEllyn is already on the list:
https://susannahfox.com/patient-led-innovation/
Keep the suggestions coming!
Thanks for Rebel Health, Susannah! It made me much more optimistic about my project to address all that went wrong during the last week of my mother’s life…not that I intend to ever stop trying!
I’ve reviewed the list of groups and organizations and am disappointed but not surprised to find that the issues of my concern seem unaddressed. My mother Norma’s death was the result of a clear and obvious unreported, unaddressed adverse medical event (AME). My very reasonable complaint to my State’s Medical Exam Board wasn’t even opened for investigation by the standard hopelessly biased Board composed of medical professionals and a couple token citizen members. Not a single word of explanation or reasoning was offered. The extremely inaccurate, demeaning and ridiculous cause of death on my mother’s certificate was entered by a hospice volunteer doctor who never met or treated Norma.
Having researched the status of all 3 preceding phenomena, I’m justified in believing all are extremely common. Yet all I find is invisibility and silence! Have you any advice on how I may find co-workers who want to address and correct these issues?
I plan to make certain that the Director of Quality Improvement at the hospital in question is aware of Rebel Health, even though the have so far completely ignored my contributions and accepting only those of their employees. It would seem indispensable for a responsible Quality Improvement Director.
Re; additions to your list of organizations…I think I recall your mention of an ambassador for AllofUs, of which I’m a participant. Yet it’s not in the lower list of professional organizations. Is there a reason it doesn’t qualify? I also asked them if they hosted a forum like the one you described regarding the ambassador and they said none exists.
And finally, for now, how about these an additions to the list?
1) Empowered Patient Coalition https://powerfulpatient.org/empowered-patient-coalition/
2) Engaged Patients https://www.engagedpatients.org/
Michael, thanks for the in-depth comment and suggestions! If I am missing an organization, you can generally assume that I simply hadn’t thought of it yet. For example, I will add All of Us as soon as I get a chance and I’ll look at the other links, too.
I do not have a ready recommendation for your question about unaddressed medical errors, but I’ll think about it and let you know if a connection emerges.
Thanks, Susannah!
I’m confident that you’re the most likely and qualified of anyone to detect any such connection. It’s critically needed!
Michael
For those experiencing hip arthritis and contemplating hip replacement surgery…I’ve canceled an appointment for such surgery because a very skillful physical therapist prescribed three hip stretches several months ago that have reduced pain during my very important long-distance walks from 6 or 7 level to only an occasional 1. This seems miraculous and I don’t know how long it can continue, but the situation seems stable! The stretches described below are performed morning and evening.
One of the stretches is of the hip rotator. The one I was prescribed is lying with legs extended and then placing the foot of the leg to be stretched under the knee of the other leg and rotating the knee of the leg to be stretched outward, holding for 30 seconds, releasing for 10 seconds and repeating for another 30.
Another stretch is that of the iliotibial band. The one I was prescribed is lying on the side opposite that to be stretched on the edge of, and facing a raised platform. The leg of the hip to be stretched is then allowed to dangle off the platform and behind the leg yet on the platform. The repetition and timing pattern is the same as the previous stretch.
The third stretch is that of the quadriceps muscle. The one I was prescribed is standing beside a raised platform with the hip to be stretched facing toward the platform, placing both hands on the platform, then placing the leg to be stretched on the platform extended to the rear. The arms the lift the upper body resulting in the quad being stretched. The same repetition and timing pattern is followed.
I love this, partly because of the peer-to-peer aspect and partly because it turns out you don’t need that surgery – at least not now! How great!
And thanks for paying it forward, peer-to-peer style, by sharing what you learned, so others can find it.
PTs are so terrific. I don’t remember specifics but somewhere during my travels (Germany?) I was told that in their country PT is just a retail service, not considered part of the healthcare system, and people will routinely try PT before deciding they need a medical appointment.