patient engagement should be seen as vital piece of healthcare puzzle
the undervaluing of patient advocates and what they can do to ensure that patients get the care they need is getting better, but there’s still a long way to go.
6 minute read
"when patients, when we are true partners, research and healthcare actually reflect our real life and it leads to better care, better outcomes, and stronger trust in the system," said monica halsey, centre.
monica halsey
the canadian healthcare system is held together by various aspects of care, including first-point examination, diagnosis and treatment. in all areas of medicine, the patient is at the centre point.
monica halsey is a patient family advocate at holland bloorview kids rehabilitation hospital who also works with autism ontario and the international society for patient engagement professionals (ispep) to improve the patient experience in the healthcare system.
she notes that if you were to compare healthcare to any other business, the patient would be the customer or the user of said services, and their input and their opinion of the service would matter most.
halsey also believes that treating patients more like customers of this service is at the heart of what patient engagement is.
“patient engagement is actually having a trusted relationship in healthcare with the end users of the product or service, which would be the patient in this case,” she said. “that’s having us involved in what we feel is a trusted and equal relationship.”
that said, when it comes to a patient’s role and satisfaction in healthcare in canada, the importance that is put on the central player in this business is less significant.
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“we can see there are a lot of gaps there. this is not anything groundbreaking, i’m telling you,” said halsey. “there are a lot of gaps in our healthcare system in general. family and people are often left in unsettling situations.”
the issue is that the powers that be often overlook the importance of patient engagement and the value of advocates like halsey, who dedicate their time and efforts to help patients navigate the healthcare system more smoothly. their efforts, while monetized, do not yet receive the same value for what they provide.
what makes patient engagement so important?
from the minute a person gets diagnosed with an illness, they are tasked with learning everything they can about the disease, finding the right specialists and treatments, and working with healthcare teams to manage both the physical and mental aspects of their affliction. but if you’ve never been involved in healthcare, where do you start?
that’s why patient engagement is so vital. people may struggle to advocate for themselves or speak up about treatments or processes they question during doctor visits, which makes it even harder to be an active participant in their own healthcare.
that’s where patient engagement comes in.
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often, patient advocates are there to guide people through the process. these could be patient navigators, social workers and patient advocacy organizations. they serve as a bridge between accessing the right healthcare and advocating for oneself.
if all hospitals and medical facilities utilized and valued patient advocates and patient engagement according to their contribution, it would be better for everyone.
“patients feel empowered and feel confident to be leaders in their area of expertise because we are the experts on our own bodies, our own conditions, our own children, whatever it is,” said halsey. “we know that we just have to be empowered to share, so that we’re going to be respected and listened to when we do do that.”
challenges faced by patient engagement professionals
patient advocacy plays a crucial role in helping individuals find the resources they need to recover or maintain their health while coping with an illness.
but many people in the healthcare system fail to understand that these people who put forth the work to help others find their way are not considered as important as other players in the field, even though they consistently ensure that the patient experience—the most important part of healthcare—is as good as it can be.
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according to halsey, they are left at the bottom of the priority list, even though they’re “embedded in every piece of the hospital.”
they work on all parts of care with patients, as well as strategic planning, research, clinical trials, and safety guidelines. but even with their “strong presence,” they’re still seen as second-class.
halsey also notes that while some organizations are leading the charge in improving patient engagement, it’s not as consistent as it could be across the board.
“it has really evolved since i’ve been in it, at least over the past 10 years. we’re seeing more patient advocacy groups. we’re seeing people like myself more involved in research projects, but it’s very different depending on where you’re doing this,” she said. “compensation is still not where we feel it should be because we want to be seen as part of a team and be compensated just like a researcher or a clinician would be on a team.”
training for patient advocates is also not prioritized, despite the knowledge that patient engagement makes for a better and more well-oiled healthcare machine.
“it’s very important because a lot of these people (advocates) have had careers, have careers doing other things, but it’s different,” said halsey. “to have this role advocating for yourself or your child in healthcare, where you don’t know everything or anything about healthcare, let alone navigating all of these systems … so another piece of it is training.”
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she also notes that “there are many case studies that show the return on investment in patient engagement” is high because when patients are well-taken care of, the journey through care is more linear.
“you’re going to create something that is more meaningful to patients, and you’re hopefully going to create it correctly the first time rather than just coming up with something that won’t work, or won’t work as well, and you’re wasting money on that,” she said. “you’re wasting time. “it’s all about creating the proper healthcare solutions the first time.”
how organizations aim to change the narrative
organizations like ispep aim to help patient engagement professionals utilize their skills and advocacy efforts to improve patient lives. they also seek to demonstrate to funding authorities the significant value and importance of proper healthcare for these individuals.
ispep, specifically, wants the rules to change in a way that provides opportunities to these professionals to open their own practices, advance in their fields, and be monetarily valued in line with what they actually do for patients.
“the work we do is like any other job, and it should be seen like that,” said halsey. “so, you know, stronger together. we are on there together to build resources and build a community where we can share information, share knowledge, share international best practices, learn from each other.”
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the organization brings together professionals from all areas, from pharma to hospital workers, to share in the patient engagement movement and make real change that will benefit the entire health system as a whole, as well as the patients who require care.
“that’s where we’re seeing the shift that if you’re willing to listen to the value and what it can add to a company, you will convert to involving patient engagement because it just makes sense,” said halsey. “it’s not rocket science, although you think it would be. it just makes sense because we are the customers of the service and the goods that they’re producing, so obviously we would know best.”
as for what’s next, ispep plans to continue working toward a better culture of patient engagement and advocacy, allowing people who do the work to be seen as valued members of the team.
“we need standards. we need guidelines,” said halsey. “there’s a need for that, and ispep, we want to do that. it’s not going to happen overnight, but i hope that it will facilitate that.”
she continued, “when patients, when we are true partners, research and healthcare actually reflect our real life and it leads to better care, better outcomes, and stronger trust in the system and i feel like, for sure in canada, trust in the system is not that great right now, that’s something we need to work on … it’s not just an added-on thing. it’s what we believe, and i believe it is the right thing to do. it’s the ethical thing to do. and if we’re humans and we care about people and health and living, i think that’s a no-brainer.”
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