Why It Matters
People with lived experience (firsthand knowledge as part of a marginalized population) have shorter life expectancies and higher costs of care in a health system that is often poorly designed to meet their needs.
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How to Honor Patients’ Lived Experience: Learning from Community-Based Organizations

By Warren Wong | Tuesday, July 18, 2017
How to Honor Patients’ Lived Experience

David is a fit young black man with braids down to his shoulders. He takes a risk and tells his story: “It took me 10 years and a lot of paperwork and effort, but my record is expunged, and I have no criminal record. I have not used drugs in 18 years, and I’ve stopped going in and out of jail.” 

Cathy is a middle-aged blond woman with a smoker’s cough. Her story: “I was raped by my step-dad when I was 10, then I ran away and went in to prostitution. I still have flashbacks…. Now I can’t take on too much stress because I know it will get me back in to drugs and smoking. I’m not out of that yet.”

Marion has a disabled son at home. She explains: “The choices we have are not the same choices you have.” 

David, Cathy, and Marion — who shared their stories with me at a Canadian Foundation for Healthcare Improvement conference called “Toward Better Health and Care for Inner-City Populations” — have an expertise that few, if any, health professionals have. They have the expertise of lived experience — first-hand knowledge of life as part of a marginalized population, whether due to racism, poverty, trauma, or other adversity.

In health care, we too often discount lived experience, with comments like:

  • “I never saw that happen.”
  • “I know a person in that group, and she says it didn't happen to her.”
  • “Logically, that shouldn't happen (and so it doesn't).”
  • “Anecdotes are not data.”

People who have lived the experience, however, can’t discount it. And, unfortunately, they don’t always feel welcome in health care settings, where few professionals have lived these experiences nor accept the decisions that their patients have made.

As Associate Medical Director for Complex Care at Hawaii Health Partners and an IHI fellow, I know that marginalized populations have shorter life expectancies and higher costs of care in a health system that is poorly designed to meet their health needs. Too often, patients go from homelessness to high-cost hospital stays, back to homelessness, and then back again to the hospital. Most importantly, the health of the patient suffers, but the well-being of the community suffers as well.

David made it easy to see what it means to make people with lived experience feel welcome when he took us on a tour of a place called PARC — Parkdale Activity Recreation Centre in Toronto. He says he owes his recovery to PARC, and he now works there as a senior peer specialist.

PARC is a community hub for people with experiencing poverty, mental health issues, addiction, homelessness, and food insecurity. It’s a friendly place in a two-story building, with game tables, eating spaces, and a beat-up piano. Food is always there: eggs are a favorite. There’s a casual, let-it-be air, and it took me a while to figure out who are staff and who are clients. At one point, a scruffy-looking man pushed past us and the director said, “That’s one of our social workers.”

Community based organizations such as PARC have the best chance of being a life saver in marginalized communities. As a senior peer specialist, David works hard to find his clients housing, provide supportive counseling, and connect people to health care. The nurse practitioner who works there helps with paperwork and makes referrals to the “good docs” — those who can be trusted to care about people like David and who are understanding about prescribing drugs that patients may initially mistrust, like psychoactive agents.

What can health care learn from PARC?

We need to rethink who is the real expert in our clinical visits with patients.

As providers, we're not the experts. The people with the learned experience are the experts. We may know disease, but we don't know what it's like to live with it. And when we don't know what it's like, we're very capable of being disrespectful, to say the least. At one time, I was appalled to hear a health care worker say we should not offer food to homeless people because it would only encourage them to “hang out.” For this population, we need to see our prejudices. We grudgingly provide medical care when needed but we look down at them as people.

Community health can only improve when the health needs of those in poorest health are met, and those health needs are rarely solved by medical care. More than 50 percent of premature deaths are attributable to social maladies such as racial and ethnic marginalization, poverty, and mental health disorders. 

If the health care system is ever to attain the Triple Aim — better health, better care, lower costs — it must recognize the failure of the biomedical model of health to address these needs. Medical care can’t solve social issues — but it can at least work harder to earn the trust of marginalized patients. One way to start is to learn from and partner with community-based organizations.

It’s time to start sharing some learned experiences.

Warren Wong, MD, is Associate Medical Director for Complex Care at Hawaii Health Partners and was an IHI George W. Merck Fellow (2011-2012).

Editor’s Note: David, Cathy, and Marion gave their permission for their stories to be told on this blog.

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