She is articulate, passionate and tireless, qualities that make Julie Drury, Chair of Ontario’s first Minister’s Patient and Family Advisory Council (PFAC), a strong advocate for engaging patients and families in the health care system, from research to clinical care and beyond. Julie advises Dr. Eric Hoskins, Minister of Health and Long-Term Care, and the ministry’s senior leadership team on how to conduct patient engagement, and understand the patient’s complete experience while in the health care system. She also plays a key role, along with the Ministry’s Patient Engagement Secretariat, in creating a network of patient advisors across Ontario by working with groups like OSSU which are active in patient engagement, as well as the Local Health Integrated Networks (LHINs), and many others to make patient engagement a priority across all aspects of health care.
Julie sees championing patient-oriented research as an important piece of her role.
How can you advance patient-oriented research in the ministry?
The ministry has a group that focuses on research, and policy driven by research. I am exploring priorities with them, and working to understand how they are engaging patients and families, looking at opportunities to engage, perhaps with research agendas driven by patients and families. I can see using the ministry’s virtual pool of 700+ advisors from across Ontario, who are interested in participating as patient and family advisors and in focus groups, as a resource for the ministry. It might be as simple as going out and asking them to define what is important in health care and asking them to define some research questions.
I can be a pipeline, creating roles for patients and families, and creating awareness within the ministry, helping them understand how they can include patients and families in research and health care.
How can OSSU work with you to help you in your role?
SPOR and OSSU’s work involving patients in research has created awareness in the research community that they should involve patients in projects. This is becoming more embedded and organic in the research system. There are many families working in your network and I want to get more involved with them, to understand what they are doing. Networking is priority number one, then sharing the structure that OSSU has created with the ministry, looking for opportunities, gaps. Is there something that OSSU is doing with the ministry that the Minister’s PFAC or the virtual pool of patient advisors could get involved in?
How does your role align with the Patients First: Action Plan for Health Care?
That’s an easy one. The establishment of the minister’s PFAC and my role will help to fulfill commitments outlined in the Patients First: Action Plan for Health Care. The Patients First agenda is about a patient and family-centred system and the patient experience is a key area of knowledge. Their expertise can help inform the system to make it better, safer, provide a better experience and more effective spending. It is all about bringing forward the experience, creating opportunities to hear about it and to do more effective patient engagement through research, clinical, home, long-term, respite and hospice care.
The unique thing about me is I have had experience in all areas of the system except long-term care.
As the mother of Kate, who had a rare mitochondrial disease, Julie has spent years advocating for the patient voice in health care.
Openness and transparency are key. It doesn’t matter if things aren’t working perfectly, but we need willingness to change and improve. Not being happy with the status quo is okay.
On patient-oriented research
I was told it can take 17 years to translate research to care. Patients will be the biggest drivers in pushing information out and changing clinical practice, as in the case of It Doesn’t Have to Hurt which is changing pain management for kids. Parents were empowered by knowledge that came from research.
Her experience with research
I was involved in having the support of a great clinician who connected us to a great researcher (Dr. Martin Holcik at CHEO) and being informed of what was going on. Most of our experience was with Kate as a patient. It was empowering to be part of research but we were at the front edge of that and didn’t really get to benefit.
How would I like to be involved? As a lay person, I wasn’t involved at a basic science level. Could I be more involved in the psycho social aspect of a rare disease? This is where the family can come in to help better inform what the research questions are.
The patient role in basic research
Meeting Kate changed everything for Martin, such as the questions he was asking, what he was looking at and where the research was going. He just worked in a lab and had no patient interaction with families but meeting Kate was a game-changer. It changed the direction for the inquiry into this area of research.
Basic researchers need to meet patients to have a conversation about the disease, what it means to live with it, what affects them the most living with the disease, and that changes the focus and the intent of research.
There is nothing worse after sitting at a table and sharing all your knowledge and experience and not hearing back. 360 communications is key. There is a need for 360 communications support before, during, and feedback and follow-up afterwards. How did [patient input] shape the conversation, the research project?