At Providence Health Care, we know how important patient voices are in creating a better health care system. That’s why we’re recruiting patients and their families to work with our leaders, staff and physicians to help improve the care and service we provide.
Patient and Family Partners are volunteers who have received health care themselves, or have a family member who has received care. They bring a patient-focused perspective to health care improvement. By sharing their valuable insights and information, they are helping to shift the care experience to a more person- and family-centred approach.
We’re pleased to introduce three of PHC’s Patient and Family Partners who generously donate their time and energy to effect change. These volunteers sit on the Care Experience Strategic Direction Advisory Committee – just one venue where diverse patient-family perspectives are helping to guide the planning and implementation of care and services provided across the organization. They all have their own unique backgrounds, but they are united in their mission to ensure patient voices are heard.
When Sheila used to imagine retirement, she pictured herself sitting by the pond at VanDusen Botanical Garden watching the birds. It was a nice thought, but Sheila isn’t one to sit still long. As someone who has been on the receiving end of health care delivery, she was keen to get involved with the movement toward a more patient-centred approach to care.
“I do have chronic problems and some rather strange experiences managing them. I do believe in patient-centred health care and we don’t have it yet. We’re working on it,” she says.
Sheila knows how intimidating it can be for patients to express their opinions in a room full of experts.
“Sometimes I’ve found it hard to feel like a team member or a participant because there’s a lot of expertise in the room and sometimes you feel a little bit awkward bringing up your point of view,” she says.
Over the years, she’s learned to be outspoken when it comes to her own care. Today, she’s eager to share her stories to help shape how health care is delivered. As a Patient and Family Partner, she doesn’t criticize or find faults in the system. Rather, she is a cooperative team member who can explain what it’s like to be a patient.
“I believe I can make a difference and I’m determined to make a difference,” she says.
Delia has had rheumatoid arthritis since she was 12 years old, so she’s had countless interactions with health care providers over the years. She believes patients should have input into their own care and be well-informed about their condition and treatment options.
“I want the patient’s voice to be expressed in their care. You should be able to help direct your care, you should be knowledgeable if you have a chronic disease,” she says. “I want the patient voice to be recognized in all treatment decisions and all health care decisions.”
In her experience, “ivory tower syndrome” can exist within the health care system, but when patient voices are included in decision-making we break down barriers.
Delia says PHC has been proactive in its journey towards patient- and family-centred care, and there’s still work to do. Patient and Family Partners, like herself, can help by collaborating with health care providers to reach a mutual understanding.
“We have a perspective that they don’t have,” she says. “We’re valuable and I think they need us.”
Christine’s husband passed away just over a year ago. He had Alzheimer’s disease and Lewy body dementia and was in a long-term care facility for the last 18 months of his life. Christine was, and remains, his biggest advocate.
She says the health care system can be exclusive, though it may not mean to be. It has its own language, its own terms of reference, its own way of doing things.
“Quite often I think the patient is actually forgotten in a lot of these processes and procedures,” she says.
Christine volunteers to ensure patients are not forgotten. Drawing on her experience with her late husband, she offers input at meetings and workshops to help authorities and health care workers better understand the patient perspective. For example, she has suggested that a regimented daily activity schedule in the home care setting doesn’t work for many residents, particularly those with Alzheimer’s.
She encourages anyone who’s eager to improve health care, and has their own lived experience with health care delivery, to consider volunteering as a Patient and Family Partner.
“Everybody has their own voice, and that voice has to be heard,” she says. “People shouldn’t be intimidated and think that you have to be an expert in everything. You don’t. You just have to have your own experience.”
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To volunteer as a Patient and Family Partner, contact firstname.lastname@example.org or 604-806-9345.