Susannah Fox

I help people navigate health and technology.

Patient-, Survivor-, and Caregiver-led Innovation

Patient-, Survivor-, and Caregiver-led Innovation

Over the last 20 years, I have spent time in patient-, survivor-, and caregiver-led health communities, learning from rebels and pioneers about the possible future of medical and assistive devices, treatment discovery, public health surveillance, and more. Radical patients don’t wait to be invited, they break in and take what they need from health care, inventing as they go. They often band together because mainstream institutions ignore or do not prioritize their problems. It is our opportunity to join their revolution.

There are companies and organizations putting patient-led innovation to work. Invest in them, partner with them, and find ways to boost their signal. It is a competitive advantage to work directly with people with lived experience.

For example:

  • American Sleep Apnea Association is a patient-led organization that provides peer mentors, support groups, and subsidized or donated equipment like CPAP machines: https://www.sleephealth.org
  • Archangels (a company I advise) helps people assess the intensity of their caregiving situation and then connects them with resources: https://www.archangels.me
  • b.well Connected Health, founded by the parent of a medically complex child, knits together health data sources to create an integrated platform for employers, payers, and health systems to deliver better care for their people: https://www.icanbwell.com
  • Body Politic began as a queer feminist wellness collective and became a wellspring of insights and research related to COVID-19 and Long Covid: https://www.wearebodypolitic.com
  • Cancer Hope Network provides one-on-one peer support matching services for adult cancer patients and their loved ones, from diagnosis, through treatment, and during survivorship: https://cancerhopenetwork.org/
  • Carellel helps employers, clinicians, and payers identify and support caregivers as they navigate health care (and home care): https://carallel.com
  • CaringBridge was founded by a caregiver to make it simple and safe to build community and ask for help when going through illness: https://www.caringbridge.org
  • Depression and Bipolar Support Alliance provides peer support and education by and for people living with mood disorders: https://www.dbsalliance.org/
  • 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
  • Dougy Center is a survivor-led nonprofit providing peer grief support to children, teens, adult caregivers, and adults living with serious illness: https://www.dougy.org
  • Enlightening Results helps people navigate the U.S. health care system, providing personalized care coordination and advocacy for cancer patients and their families: https://www.enlighteningresults.com
  • Equip is a survivor-led 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
  • Everlum Bio, co-founded by a caregiver, helps bridge the gap between families and scientists who are seeking cures for rare conditions: https://everlumbio.net
  • Family Voices connects families of children and youth with special health care needs and disabilities with local peer-led organizations: https://familyvoices.org/
  • Genetic Alliance offers training, education, community engagement, and research services to individuals, families, and patient groups: https://geneticalliance.org
  • Genoptræning Danmark (Rehabilitation Denmark) provides intensive recovery training by and for people who have experienced serious injuries: https://gen-dan.dk
  • Global Parents for Eczema Research is a parent-led organization that provides peer support for caregivers and works to identify the highest priority needs among parents and young patients with atopic dermatitis so research funding can be directed appropriately: https://www.parentsforeczemaresearch.com
  • Hope for Henry, founded by parents of a child with a rare disease, helps hospitalized kids confront the challenges of serious illness and find joy: https://hopeforhenry.org
  • I AM ALS is a patient-led movement centered on ALS but with a wider target: Helping everyone to participate in organizing for change: https://organizingplaybook.org
  • IBDRelief is a patient-led digital health care agency focused on inflammatory bowel diseases like Crohn’s disease and colitis: https://www.ibdrelief.com
  • Imerman Angels, founded by a cancer survivor, matches cancer fighters (their term), survivors, and caregivers with peer mentors: https://imermanangels.org/
  • Insulet, founded by a D-dad (diabetes dad), makes the Omnipod, a wearable, tubeless insulin pump: https://www.insulet.com
  • International Children’s Advisory Network (iCAN) is a parent- and youth-led organization that provides opportunities to contribute to research, innovative projects, and peer connection among children and youth with complex medical conditions: https://www.icanresearch.org
  • Light Collective is a patient-led health data rights organization that has created a toolkit for online health communities: https://lightcollective.org
  • Meanwhile Health connects healthcare providers, researchers, and leaders with patient and caregiver insights: https://meanwhile.health
  • Michael J. Fox Foundation for Parkinson’s Research funds research pursued by clinicians and citizen scientists, including 15 disease-modifying interventions that are in clinical trials, a biosample library from 1,500 volunteers, lived experience data collection from 48,000 people, and investigations that have resulted in 20 early-stage therapies: https://www.michaeljfox.org
  • N=1 Collaborative brings together scientists, clinicians, and families seeking breakthrough, customizable treatments for rare conditions: https://www.n1collaborative.org
  • National Breast Cancer Coalition funds research, trains advocates, and educates stakeholders, all with the goal of ending breast cancer: https://www.stopbreastcancer.org
  • National Pain Advocacy Center is a patient-led advocacy organization focused on systemic change: https://nationalpain.org
  • Nema Health, a survivor-led company, focuses on trauma recovery. Peer mentors with lived experience are part of the care model: https://www.nemahealth.com
  • NOCD, founded by someone who overcame obsessive compulsive disorder (OCD), helps people connect with therapy tailored for OCD recovery: https://www.treatmyocd.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
  • Patients United to End MND advocate for research funding and broader public understanding of motor neuron disease in the UK: https://united2endmnd.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
  • Pictal Health, a patient-led company, creates patient-curated health history timelines for better communication, coordination and collaboration: https://www.pictalhealth.com
  • Poppy Seed Health, a survivor-led company, connects people with emotional and mental health support for pregnancy, postpartum, miscarriage, and loss: https://www.poppyseedhealth.com
  • Promise Resource Network (PRN) is a North Carolina-based, survivor-led suicide prevention organization. Employees and volunteers use their shared experience to support healing from trauma and to reclaim an identity not rooted in illness. Peer Voice NC, an offshoot of PRN, incubates survivor-led start-up initiatives that create recovery alternatives: https://promiseresourcenetwork.org/
  • Ravel Health is a patient-led company offering care for people living with tick-borne illnesses like anaplasma, ehrlichiosis, babesia, Lyme disease, bartonella, and tick-borne relapsing fever: https://ravel.health
  • Savvy Co-op helps people use their personal experiences to improve health care delivery and innovation: https://www.savvy.coop 
  • SelfiHealth (a company I advise) matches people with similar concerns with each other and with organizations, including the American Heart Association: https://www.selfihealth.com/
  • SimpliFed, founded by a parent who overcame baby feeding challenges, provides virtual breastfeeding support, including a network of peer allies: https://www.simplifed.com
  • Sins Invalid is a peer-led disability justice-based performance project that unashamedly claims beauty in the face of invisibility: https://www.sinsinvalid.org
  • T1Pal supports people living with insulin-requiring diabetes who would like to use Nightcout, a real-time diabetes dashboard, but do not yet have the skills to get started: https://www.t1pal.com
  • Thriveabetes is a community providing support and information to people living with diabetes in Ireland: https://thriveabetes.ie
  • Tidepool, a patient- and caregiver-led nonprofit, builds software to support people living with diabetes: https://www.tidepool.org
  • Transhealth is a trans-led comprehensive health care center that supports and empowers trans and gender-diverse individuals and families in western Massachusetts: https://transhealth.org
  • 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

Note: This list is incomplete. Please suggest additions. Drop a comment on this post or find me on Twitter, LinkedIn, or Threads.

The following organizations and companies are not patient- or survivor-led, but incorporate peers with lived experience into their work in a meaningful way:

  • Colorectal Cancer Alliance, founded by survivors, is a powerhouse research and advocacy organization that includes patients and caregivers at every stage of their work: https://www.ccalliance.org
  • Critical Path Institute (C-Path) is an independent, nonprofit, public-private partnership with the U.S. Food and Drug Administration (FDA) that brings together stakeholders from across science, including patient-led groups, to share ideas, data, risks, and costs to accelerate drug development: https://c-path.org/
  • Family to Family Health Information Centers provide peer counseling to families of children with special health care needs. The Centers are funded by the Health Resources and Service Administration, a division of the U.S. Department of Health and Human Services. Grant information: https://www.hrsa.gov/grants/find-funding/HRSA-22-069
  • firsthand employs people with a history of serious mental illness to help others with the same conditions access the care they need: https://www.firsthandcares.com
  • Grapevine Health works with Black and Latinx health care providers to build trust and tailor health messages with and for their communities: https://www.grapevinehealth.com
  • Hive Networks, another company I am proud to advise, builds online collaborative workspaces for clinicians, researchers, and patients: https://www.hivenetworks.com
  • IBD Partners is a partnership of the UNC School of Medicine and Crohn’s & Colitis Foundation that was co-founded by a patient, Sean Ahrens. Patients work with scientists and clinicians to identify clinical research priorities: https://ibdpartners.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
  • Omada Health is a virtual-first chronic care platform that offers peer support as part of their behavior change model: https://www.omadahealth.com/
  • Patient Focused Medicines Development created a clearinghouse of practical tools to plan, assess, and execute patient engagement initiatives led by pharmaceutical companies and other organizations: https://pemsuite.org/
  • Peers for Progress provides consulting and collaboration services that incorporate peer support models to researchers, community organizations, and health care systems: http://peersforprogress.org
  • Solve M.E. uses a shared leadership model, incorporating people with lived experience into their work: https://solvecfs.org/
  • ZealCare helps people with complex chronic conditions navigate the U.S. health system. Peer patient groups are led at first by trained, professional coaches and then, after about four months, by a peer leader chosen by group members: https://www.linkedin.com/company/zealcareinc/

For more information, read my Harvard Business Review article, “How Chronic-Disease Patients Are Innovating Together Online.” My upcoming book, Rebel Health, is a field guide to this revolution.

If you have questions or suggestions, please join the conversation in the comments of this post.