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machado: cross your fingers. we may (finally) be getting to the point where patient and caregiver voices matter

during a recent panel discussion held by the gi society, abigail redding, a 17-year-old living with inflammatory bowel disease had the strongest message of all: don’t confuse illness and vulnerability for weakness, because it's actually a change-making superpower.

by lisa machado

may 29 2023

7 minute read

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when will having patients at the table be a rule?

canada recently announced its first rare disease strategy, and though not a reason to rest, it represents the possibility of space being made at the tables around which health decisions are made. getty

the pandemic battered patients and caregivers in a way that is almost irreparable.

from keeping caregivers out of health-care facilities and loved ones dying alone, to cancelled surgeries and missed diagnoses, those who needed the health-care system the most were pushed to the side, left to flail on their own and fight an impossible fight — if they weren’t too sick and tired.

and while it’s easy to point a steamy accusatory finger at the pandemic as the reason so many of us suffered — and continue to — that’s just a lame crutch that policymakers, hospital administrators, and our governments continue to lean on.

the truth is — and anyone who needs health care (ahem, all of us) knows it — the system that we rely on to keep us well, treat our conditions and make us not dead was in shambles long before covid-19 began its determined crawl across the globe. for those of us who had a seat up close, even if no one else wanted to admit it, we knew that we were on track for a fiery crash and burn — the virus simply stepped on the gas pedal.

our health-care system was broken long before covid

also gunning it, though, were patient and caregiver advocates, and not just the ones with titles and affiliated with organizations. but more importantly, the people living the collateral damage of the pandemic were also gaining momentum. and although these voices were alive and well before covid-19, just like the cracks in canada’s health care system, this time, in the face of halted cancer treatments, ill-equipped long-term care homes and shameful unaffordability and inaccessibility of life-saving medications, the noise became difficult to ignore.

now, three years and a few months post-pandemic, although we still have a long way to go, there are many initiatives in play to support — and protect — the health of canadians, making it feel like there may be reason for a little hope.

for example, last november, the canadian centre for caregiving excellence released a white paper calling on governments to support a national caregiving strategy and this past march, canada announced its first rare disease strategy after years and years of advocating by many patient groups, namely the canadian organization of rare disorders (cord).

what these initiatives, and others, symbolize is bigger than just hopeful policy change. and though not a reason to rest just yet, they also represent the important promise of space being made at the tables around which health decisions are made, chairs being added and eyes and minds being opened.

this happened earlier this week at the inside affair, an annual event held by the gastrointestinal society, an organization that supports people living with diseases that affect the gastrointestinal system, like irritable bowel syndrome, chronic acid reflex and inflammatory bowel disease. the gi society offers all kinds of information on gi health, educational lectures, and connections with support groups. but on this particular evening, in addition to cute chocolate brownies shaped like poops, they offered a compelling discussion about the importance of the patient voice in drug funding approvals, clinical trials and our health-care system in general.

in addition to cute chocolate brownies shaped like poops, the gastrointestinal society’s “inside affair” event offered a compelling discussion about the importance of the patient voice in drug funding approvals.

living with disease from a 17-year old’s perspective

seventeen-year-old abigail redding, who lives with crohn’s disease, kicked off the discussion with an at-times shivery poem that she wrote about what it was like to be her. she chronicled her experience with crohn’s for the crowd, describing loneliness, isolation and vulnerability, as well as physical pain: “bleeding, scraping, stinging.”

to start with lived experience was the perfect icebreaker and tone-setter for the expert panel, which also included suzanne mcgurn, ceo of the canadian agency for drugs and technologies in health (cadth) which makes approval decisions on drugs and medical devices; christine elliott, the former ontario minister of health and deputy premier, who is now counsel for fasken health law group; and gail attara, the head of the gi society.

from left to right: gail attara, abigail redding, christine elliott, suzanne mcgurn, tracey ramsay.

moderator tracey ramsay, vice-president and general manager of pharmaceutical company abbvie, started the conversation asking the panellists to weigh in on how the way patients are engaged in the health-care system — particularly in decisions around drug funding — has changed over the past few years and to comment on the assumptions about what it means to be a patient.

according to attara, who pointed out that patient groups are doing a great job of providing patient communities with factual information and essential resources, often “better than what they get from their doctors,” in order to best meet the needs of patients, we must first lose the blame.

we must stop asking patients what they did wrong

“people often say to a patient, ‘what did you do wrong?'” she said. “even from a health technology assessment (drug approval) perspective, don’t look at [the drug as] something for someone who did something bad. [we need to think instead that] this is a drug that can help a person who is living with a condition.”

part of this shift in how patients and their experiences are perceived, the panellists said, will happen as we figure out how to involve them more in the decision-making process — and not just as a summary on a piece of paper, but as a living and breathing human, in the room with decision-makers.

“the question is, how do you bring the patient story to life, which is very different than [asking] what is a disease,” said mcgurn, admitting that while cadth has many ways of engaging patients, there is room for improvement.

describing what it was like to hear a patient telling his story about the 188 medical appointments he had while searching for a rare disease diagnosis, all before the age of 18, versus looking his disease up online, mcgurn acknowledged the value of the patient narrative.

“when you hear someone’s story, it’s very different [than what you read],” she said. “each meeting [at cadth] starts off with a passionate reading of a patient submission. but it always comes back to what the patient said mattered to them. it’s not perfect, but we are headed in the right direction.”

what is it going to take to bring the patient story to life?

mcgurn went on to describe some goals that cadth has set its sights on, including “fostering meaningful relationships with patients, families, caregivers and patient groups, as well as improving diversity, equity, inclusion and accessibility to bring more voices to the narrative.”

for attara, that means patient representatives at the table, actively involved in the discussion — something that has the power to spark what she calls an ‘aha moment,’ when the true impact of the condition on the patient and what matters most to them is authentically communicated and understood.

“you can read [a description of the patient’s experience], have someone else read it, or the patient can read it,” she said. “when someone who has the disease or who represents the person with the disease can convey the experience to the [decision-making] committee, they get the ‘aha moment’ and then we all do a better job. patient voices make a difference in funding decisions.”

asked to comment on the importance of patient input, both in her former role as health minister, as well as patient ombudsman, elliott noted that while lived experience is essential to all parts of the health care system, the patient is not asked often enough what they want from it.

“i think there is a trend toward more meaningful consultation [with patients] now, but we are not quite there yet,” she said. “our system is more institution-based than patient-centric — we have to think about what we need to do to make it truly responsive to the needs of patients.”

but despite the fact that there are seismic shifts that need to happen to get patient — and caregiver — involvement in canada’s health-care system to a place in which the best outcomes can happen, abigail pointed out that we’re not completely off track.

“there are a lot of things to celebrate,” she reminded the crowd. “i’m grateful for my [health-care] team who i will probably have for the rest of my life and the drugs that have put me into remission.”

the closing comments from the other panellists included emphasizing the value of listening to the needs of patients, acting on them and providing feedback so they know they have made a difference (elliott); pushing the pharmaceutical industry to involve patients earlier in the drug development process — “when the drug is just a twinkle in your eye” — so there is a clear understanding of the outcome that the patient wants, not what other people think the person wants (attara); and doing a better job of reaching the communities that aren’t being heard, “the people who wouldn’t use our processes, who aren’t on facebook.” (mcgurn).

all of voices on the panel were powerful, but the words that resonated most with attendees, judging from the excited conversations in the lineups for glasses of niçoise salad and palm-sized tandoori chicken tacos, came from abigail — a brave, well-spoken and confident young woman counting on our health system to help her stay healthy and have a great quality of life.

most of us went home that night reminded of the impact that lived experience has, and maybe feeling a bit more optimistic that finally, a shift is happening towards a system in which having a patient at the table is a rule, not a box to check. but abigail sent the strongest message of all: don’t confuse illness and vulnerability for weakness, because it’s actually a change-making superpower.

and if she and the rest of the patient community have anything to say about it, it’s coming soon to a regulator near you.

lisa machado is the executive producer of healthing.ca.

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lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: cross your fingers. we may (finally) be getting to the point where patient and caregiver voices matter

during a recent panel discussion held by the gi society, abigail redding, a 17-year-old living with inflammatory bowel disease had the strongest message of all: don’t confuse illness and vulnerability for weakness, because it's actually a change-making superpower.

our health-care system was broken long before covid

machado: would you keep a scary diagnosis a secret?

machado: sharing stories come at a cost, but it's worth it

living with disease from a 17-year old’s perspective

we must stop asking patients what they did wrong

what is it going to take to bring the patient story to life?

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machado: cross your fingers. we may (finally) be getting to the point where patient and caregiver voices matter

during a recent panel discussion held by the gi society, abigail redding, a 17-year-old living with inflammatory bowel disease had the strongest message of all: don’t confuse illness and vulnerability for weakness, because it's actually a change-making superpower.

our health-care system was broken long before covid

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