“Patients and family members should not be scared to speak up,” says Mathieu Jackson, Vice-President of the Canadian Hemophilia Society (CHS). “Because in the same way that health care professionals have a valuable perspective, patients and families also do.”
Mathieu Jackson has been a patient all his life, having been diagnosed with Hemophilia B at a young age.
Jackson explains that B is a rare strand of Hemophilia, affecting only 1 in 50,000 people. “I think we’re under 10 people in the province of Quebec,” he said.
An experienced patient, Jackson is a Patient Partner at the Centre for Excellence on Partnerships with Patients and the Public (CEPPP) in Montreal.
Jackson is also a member of Health Standards Organization (HSO)’s Technology-Enabled Health Technical Committee, which recently released the new Virtual Health Standard (HSO 83001:2018 – Virtual Health Standard). This is a National Standard that will be applied around the world.
Jackson notes that the new standard is “extremely important.” “It’s going to be the framework for the implementation for a lot of these new technologies,” he says.
He adds that inevitably, new technologies will be implemented and used. “It’s very important to have a good framework in place to try to avoid future mistakes,” he says.
Jackson said he wanted to be part of HSO’s Technical Committee because he realized the “high potential” in being part of a process that shapes the future of health care.
“I was already participating in various activities, trying to help people and contribute to the health care system,” he said. “I thought that I could really have an impact with my experience.”
In addition to being a patient himself, Jackson learned more about the health care system when he lost his father to cancer and an unfortunate medical miscommunication.
“That was four or five months of being with my dad in the health care system, navigating it and trying to make sure that he got the best care possible,” he said.
Jackson adds that his father passed away after surgery was done against an oncologist’s recommendation. “Unfortunately, it didn’t work out,” he said.
Jackson notes that his favourite part of the HSO Technical Committee process were the discussions with fellow committee members.
“We had some great discussions and constructive debates,” he says. “I thought that my voice was really listened to and that my comments had an impact.”
Jackson notes that the Technical Committee process enables patients and families to get familiar with the inner workings of the health system.
“It’s interesting to see the different perspectives of industry people and health care professionals,” he says. “It gives you a lot of insight into how the health care system works.”
Jackson says that there’s a bit of a balancing act that occurs between patients and health professionals on the Technical Committee.
“It’s important that patients be at the table as main stakeholders because we are the people who are going through the health care system,” he said. “It’s very important that we be at the table as checks and balances.”
He notes that patients and family members should not be intimidated or shy away from joining one of HSO’s Technical Committees.
Jackson adds that patients and family members often have valuable experience that health care professionals don’t necessarily have.
“You might think that what you have to say is irrelevant, but it actually could be useful and can possibly even lead to major impacts on the health care system.”
Do you think you or someone you know could be an asset to a Technical Committee? Learn more about HSO’s Technical Committee and how to apply here.
Additionally, along with fellow Technical Committee member Dr. Laura Lee Copeland and HSO Standards Program Manager Amy Pack, Jackson will be co-presenting on virtual health at the 2019 National Health Leaders Conference (NHLC) in Toronto in June.
“I’m very happy to help and to encourage others to participate,” Jackson says. “I really want to drive home the added value and the benefits of having patients on these Technical Committees.”
Jackson will be part of a panel entitled Virtual Health: Impossible Without Patients – Panel Perspectives from a Patient, a Provider and a Health Sciences Specialist.
Attendees will gain insights on the undeniable value-add of involving patients in the conception and delivery of health services, inspiring health care leaders from around the world to implement systematic change in the way they engage with patients.
Learn more about the conference here.