A new diagnosis can mean catastrophe. What do I do now? Do I need new doctors, new medications? Surgery? What should I buy? How much will it cost me? What should I tell my loved ones? One of the most-overlooked resources at a time like this is peer-to-peer health.
Peer-to-peer health supports individuals dealing with health conditions by connecting them with others who have had similar experiences.
Generally the first stop is with a health professional to get a diagnosis. But after that, peer-to-peer health can deliver information about the best support systems, possible ways of finding grants or other financial aid, alternative treatments, recommendations for a medical system, emotional support in dealing with a health issue, and practical advice for coping with health situations, as explained in a Pew Research Center report on the topic. They can also reduce isolation, share recovery stories, increase access to services and in other ways ease a person’s path through illness.
Often, such resources are based in a community or in a hospital or medical setting — think of support groups for new parents, or mental health resources in a community for young people. Other resources can be found online, where patient support groups exist for almost every condition — sometimes several for one condition, for example, diabetes or breast cancer.
There are also other organizations like Susan G. Komen for the Cure (for breast cancer), RESOLVE (for infertility), IAmAls (for ALS) and other condition- or disease-specific organizations too numerous to name — and online resources like Facebook pages or Reddit communities where people can compare notes with patients and seek solutions and find resources.
Peer support is an integral part of recovery-oriented mental health and substance abuse treatment and is considered a best practice by the Substance Abuse and Mental Health Services Administration.
The help offered by peers can be good, better and best — the landscape changes frequently, with the devotion of time and resources depending on funding, governance and so on. To find a peer group, a patient might ask others who have the same issue or Google around to see who’s the most up-to-date and reliable. Note: We do not give medical advice, and some of these patient communities are more reliable than others. Do your homework and analyze information carefully.
Also keep in mind that a lot of patient organizations rely on funding from drug companies and other industry players. That might keep them from being candid in their recommendations, no matter how much they talk about service.
Resources
Here is a sampling of resources.
Imerman Angels, founded by a cancer survivor, matches cancer fighters (their term), survivors, and caregivers with peer mentors.
Rebel Health is a book from Susannah Fox, a longtime healthcare expert and former Chief Technology Officer of the White House Office for Science and Technology Policy. She’s an expert in all things peer-to-peer health, where patients (or, as we like to call them, PEOPLE) compare notes and find solutions. We have seen and heard many success stories from peer-to-peer health — while again, we note that you should do your homework and analyze information carefully.
A really well-curated list of peer-to-peer health organizations can be found on Fox’s site. Headlined “Patient-Led Innovation,” it catalogs a wealth of groups from what Fox describes as 20 years she has spent “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,” she writes. “They often band together because mainstream institutions ignore or do not prioritize their problems. It is our opportunity to join their revolution.” Find the page here.
Some examples:
- “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 … 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
- “Cluster Busters provides resources for people suffering from cluster headaches, including patient-led research studies: https://clusterbusters.org
- “Depression and Bipolar Support Alliance provides peer support and education by and for people living with mood disorders: https://www.dbsalliance.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
- “Nicotine Test is a patient-led research project focused on the interaction of nicotine and the SARS-CoV-2 virus: https://linktr.ee/thenicotinetest“
The Patient-Led Research Collaborative “is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers.” Founded out of the Body Politic Slack support group that did early research on Long COVID in April 2020, the group has members who are “researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.”
The Alliance of Professional Health Advocates has advocates for hire.
Patient Advocate Foundation has a case management program that says it will help as, yes, a patient advocate. Conditions apply.
The National Association for Medication Access and Patient Advocacy says it will try to gain access to medications for people in need. For people who need medications, a search for a patient assistance program might also help. Google “patient assistance program” “your medication.”
The PAN Foundation has information on funds that may be available for specific illnesses and conditions.
DollarFor is a nonprofit that will help see if you qualify for hospital financial aid (also, unfortunately, called “charity care”) and help walk you through the process. The rules vary by hospital and by income. This woman got a $6,000 bill turned into a $466 bill with DollarFor.
The Expect Miracles Foundation helps young cancer survivors strengthen their financials after treatment. DollarFor works with them to help reduce or erase medical bills.
