“Once you’ve entered into patient partnership; when you understand it and apply it, it’s impossible to go back.” – Claudia Houle, Patient Expert, Health Standards Organization (HSO) & Accreditation Canada

Since its launch on Feb. 1, 2017, HSO has brought to life a people-centred philosophy, putting people – patients, families etc. – at the very centre of everything it does.

Patients are now playing full, active roles as part of HSO’s Technical Committees, which develop standards and assess Leading Practices. On the AC side, patients are now active members of the accreditation survey team. More patient partners will be recruited at AC and HSO over the summer.

One of the people spear-heading this effort is Claudia Houle, a resident Patient Expert.

When you look at Houle, there are no obvious signs that she has issues with her health. Young and bubbly, she looks like any healthy 30-something. She likes to relax and spend time with her dogs; a Great Dane mix named Django and a Boxer named Lexie. Yet Houle’s experience with the Canadian health system stretches back over 20 years.

Houle has had more than her fair share of interactions with the health system; from doctors’ appointments to surgeries, to numerous hospital stays.

Houle was diagnosed with Type 1 diabetes at 14. As a result of her diabetes diagnosis, she struggled with anorexia and bulimia for several years. In addition to diabetes, for which she wears a 24-hour insulin pump, Houle also deals with issues related to hypothyroid as well as polycystic ovarian syndrome, trigeminal neuralgia and endometriosis. Also, last January, Houle had to have part of her breast removed.

In an interview, Houle noted that becoming a regular patient as a teen ignited in her a passion for patient partnerships.

At the time, when she was in the children’s hospital at CHU Sainte-Justine in Montreal, Que., she realized that too often the patient voice was silent.

“I had no right to make any decisions and I realized that the system had to change,” Houle says.

She adds that her diagnosis changed her life in many ways. “I have to live with my diabetes 24/7,” Houle says. “I have to be on my own and make my own decisions about my health. And so, I decided that I wanted to do something.”

As she got older, Houle worked to make patient partnerships a reality. Houle obtained a Bachelor’s Degree in psychology and another one in nutrition, becoming a dietician at Sainte-Justine. “I was partnering with my own patients, but I still wanted things to change at a higher level,” she says.

Houle says that her passion for patient partnership comes from her own extensive direct care experience. She notes that over the years, she had to deal with many difficulties as she navigated the health care system. She says that she realized that care based on partnership could have avoided many of these challenges. “Another kind of [care] approach – a partnership approach – could have helped me to avoid so much suffering,” Houle says.

She adds that she is dedicated to helping health systems grow and evolve. “My motivation is to see the system change, and for the better,” Houle says. “There is as much advantage for the health professional as there is for the patient in a partnership approach.”

Houle notes that in addition to being a dietician and a patient expert at HSO, she highlights the value of the patient voice at the Université de Montréal by helping in the training of medical students and working as a patient mentor.

Houle says that health organizations – from the direct care level to the governance level – should embrace patient partners as they provide valuable insight on their quality of life, which can have a direct impact on the success of their treatment.

She recognizes that clinicians strive to provide the best care possible to their patients. She adds however, that the treatment goal of the clinician is not necessarily the goal of the patient. “If I’m not working in partnership with my patient, how would I know that the best treatment I am providing is making them unhappy?” Houle says. She adds: “Even if an illness is being properly treated, if the patient is unhappy and has no quality of life, we’ve gained nothing.”

Houle notes that clinicians need to work together with patients to determine which treatment is best for their unique situation. “As a patient, I will always add my perspective and my quality of life into the equation,” she says. Houle adds that her health issues have given her more strength than weakness. “I consider myself lucky and I hope that I can help others with my lived experience.”

Mireille Brosseau, Program Manager in HSO’s Patient Partnership Experience (PPX), notes that Houle learned the importance of partnering with her care team at a young age as she worked to find ways to be respected for her knowledge and expertise in her own care. “Through her own narrative and curiosity about matters outside her own experience, she is helping HSO live and learn about the value and benefit of partnership,” Brosseau says.

Brosseau adds that in working with Houle, HSO is demonstrating that it is actively partnering with patients.

“Every team member has an opportunity to hear from someone who has significant experience navigating the health system and to get insight into the challenges and opportunities there are for improving health care and outcomes,” Brosseau says.

Houle adds that if more health organizations worked with patients as partners, either at the direct care level or at a higher level, there could be less strain on the health system in general. She notes that if more patients were active participants in their care, this would lead to better communication with clinicians and better health outcomes.

When it comes to patient partnership, Houle urges health care providers to keep an open mind. Clinicians have to understand that though they have a preferred treatment plan, the patient may have a plan for themselves or options they would like to explore, Houle says. “It’s not about winning,” she adds. “It’s about helping the patient find treatment that will best benefit them.”

Houle also notes that health organizations should aim to have more patients involved at the governance level. If organizations are open to patients having a broader role, Houle says that they’ll see the value add. “If you try it, you’re not going to go back,” she said.

 

Quote

“Once you’ve entered into patient partnership; when you understand it and apply it, it’s impossible to go back.” – Claudia Houle, Patient Expert, Health Standards Organization (HSO) & Accreditation Canada

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