Susannah Fox

I help people navigate health and technology.

Patient-led Innovation

Patient-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.

Here 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
  • 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
  • Cancer Hope Network provides one-on-one peer support matching service for adult cancer patients and their loved ones, from diagnosis, through treatment, and during survivorship: https://cancerhopenetwork.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
  • 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
  • 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
  • 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
  • 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/
  • 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
  • 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
  • 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
  • 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/
  • Savvy Co-op helps people use their personal experiences to improve health care delivery and innovation: https://www.savvy.coop 
  • 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
  • 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

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 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/

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