From October 4-7, 2021, attendees came together virtually to share and learn about ‘Co-designing for health and well-being with individuals and communities’ at the first-ever North American international conference on integrated care (NACIC). Organized by the International Foundation for Integrated Care (IFIC), the conference brought together “leaders, researchers, clinicians, managers, citizens, patients and caregivers from around the world who are engaged in the design and delivery of integrated health and social care.”
- Over 300 patient and family advisors received complimentary registration for the conference – Health Standards Organization (HSO) and Accreditation Canada (AC) were proud to sponsor the attendance of patient and family advisors
- The conference welcomed 49 countries
- The three plenaries were livestreamed and can be viewed for free for a limited time
- Congratulations to Improving Integrated Care for Youth (IICY) Initiative Project Lead Samantha Laxton and her team for being awarded Best Poster for “Understanding Your Integration Journey: Overview and Lessons Learned from HSO’s Integrated Care Assessment Tool.”
Themes observed throughout the conference were:
- Small steps can create a big difference: create small projects, build trust, learn and scale
- Discussions focused on: co-design, tokenism, fairness, vulnerability, authentic engagement
- Ask the question: “What is it that we don’t know we don’t know?”
- Advancing integrated care takes time: Be patient, keep learning and KEEP GOING.
Day Two Plenary
HSO and AC were proud to participate at NACIC. The following is a summary of the Day Two plenary session, which featured members of the HSO and AC teams (full HSO/AC session list here):
NACIC’s Day Two plenary session featured the topic Meaningful partnerships with patients, families and communities. Over 300 attendees logged on to hear an engaging and real conversation from keynote speakers Dr. Kerry Kuluski, Research Chair in Patient & Family-Centred Care; Scientist, Institute for Better Health and Zal Press, Vice-Chair, Patient and Community Advisory Committee- CADTH, Patient Commando.
Dr. Kerry Kuluski: “We’re moving beyond policy directive and a strategic plan that says ‘we do strategic partnership.’ It’s about building the tools to create this. To give staff time to develop partnerships, to work with partners to learn their barriers to engagement so they can participate in a way that works for them, and then have time, resources to make it work,” said Dr. Kuluski on how reflecting will help us to achieve the goal of better co-design and better forms of authentic engagement.
Zal Press: “Trust has to start at the leadership level. UK organization National Institute for Health and Care Excellence (NICE) released guidelines for shared decision-making, which includes recommending ‘embedding shared decision-making at every level.’” He continued: “How does an organization make the leap from using co-design to placate the masses to committing itself to much more disruptive but noble ideal of making organizational co-leadership a strategic priority”?
The conversation was followed by reflections from plenaries:
Leslee J. Thompson, CEO Health Standards Organization and Accreditation Canada: “Every patient, caregiver and community deserves to experience care in a system that is people-centred, safe and compassionate and we cannot leave that to chance. This is the biggest learning I’ve had in my career. The process [of evolving our standards language to create a team INCLUSIVE of patients and families] has taught me that there simply is no other way to lead. Shared accountability, shared values are hard to be put into practice, but are absolutely essential and need to transcend throughout the organization.”
Mario di Carlo, Patient Partner and Accreditation Canada Patient Surveyor: “When I bring my perspective, it’s about improving the team and of course where the patient is at the centre – but everybody has to win.” He shared about his experience working with the University of Montreal to “train undergraduate and graduate students about professional partnership, but also collaboration with patients.” He added: “The patient is a part of that loop; they become a part of the team.”
Heather Thiessen, Patient Partner and Accreditation Canada Patient Surveyor: “I may not see integrated health systems in my lifetime and I’m ok with that. But being a part of this process and partnership truly does bring me hope and brings trust back into a health care system that I did lose trust with. Be honest, vulnerable and creative and together, we can create meaningful changes. That is the beauty of patient partnership.”
Dr. Damara Gutnick, Senior Director, Office of Community and Population Health, Montefiore Hudson Valley Collaborative; Health System Associate Professor, Departments of Epidemiology & Population Health, Family & Social Medicine and Psychiatry & Behavioural Sciences, shared about an initiative called BRAID: Bridging research, accurate information and dialogue to build trust through continued engagement and community feedback: “Make understanding what matters to the patient and to the community your primary goal, and build trust by really listening and coming alongside and co-designing together.”
Sue Sheraton, Former Director of Patient Engagement at the Patient-Centred Outcomes Research Institute (PCOR): “Patients and caregivers, let’s think about flipping the table around. In the traditional way, we patients and caregivers have waited to be invited to participate in their projects. Think about this differently and consider organizing yourself. Develop a plan, develop your asks of health care leaders, call a meeting and invite them to YOUR table. There’s a perception that ‘they would never say yes,’ and you might be surprised.”
Attendee reflection (via chat): “To have a meaningful partnership with patients, caregivers and communities means you build an on-going relationship with them, not just call on them when you need it. It also takes a lot of time and resources to start and follow through with co-design principle. Often, we do not have the time… It is a learning journey for all.”
- Co-lead with patients
- Seek voices of those who are not at the table; ensure the voices reflect the community.
- Don’t wait to be invited to participate, organize a plan and asks of health care leaders, then invite them to your table.
Keep the Conversation Going
Please join us this October 21 for a post-NACIC webinar co-hosted by IFIC, HSO and Accreditation Canada:
Webinar – Let’s Get Real: Patient Partnership to Advance Integrated Care
Date: October 21, 12:00pm EST
- (Moderator) Hélène Campbell,Patient Engagement Lead at Health Standards Organization, Ottawa, Ontario, Canada
- Heather Thiessen, Patient Surveyor with Accreditation Canada and Patient Advisor with Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada
- Jacqui Browne, Patient and Disability Advocate Partner, Steering Group IFIC-Ireland
- Mario di Carlo, Patient Partner and Patient Surveyor with Accreditation Canada
- Leslee J. Thompson, CEO, Health Standards Organization (HSO) and Accreditation Canada (AC), Ottawa, ON