Jodeme Goldhar made an impact at ICIC18 in Utrecht when she stood alongside caregiver Carole Ann Alloway to deliver an impassioned keynote on Transformation Through Integration. Here she talks about the importance of including patients and their families in the process of designing models of care, and gives a flavour of the 1st North American Conference on Integrated Care taking place in Toronto in 2020.
Historically, healthcare systems were designed around clinicians, policy makers and funders, but we (funders, leaders, policy makers, clinicians, researchers) have a responsibility to partner with patients and caregivers (family and friends) to co-design models of care that work for those who are receiving care and their families, as well as for the people who are providing the care.
The Change Foundation is an independent think-tank that aims to inform positive change in Ontario’s healthcare system, and our current strategic plan is focused on shining a spotlight on family caregivers and their interactions with the healthcare system. We are working to re-imagine the lens through the eyes of patients and their families, so they come together as partners to identify and resolve issues, and share power. Through this integrated system, I believe we will get to realise the potential of our health and social care systems.
Making patient and family empowerment a priority
Every country and every community is at a different stage of the evolution of partnering with patients and families, and in developing integrated care programs and systems as key to improving their health and social care systems. Having patients and families tell stories is an important first step; it does not lead to co-creation of the answers, to different policy or funding priorities or different models of care, but it does lead to recognition that the voice of patients and families is important. The next goal is to get to where we are co-creating the answers.
This is where we start to look at examples of where people have seen benefits, and the impact is very powerful. Going back about nine years, we understood in some places the benefit of engagement, but we were not realising the potential of it. So, The Change Foundation chose to shine the spotlight on patients and families to redesign integrated models of care. We spent a year just listening and learning; we went out to engage with hundreds of patients and families to understand what their experience was and what was most important to them. We also went out and met hundreds of clinicians and organisations, to ask about their experience.
What we learned was that patients and families had good experiences in general, but very rarely did health providers centre the care plan on what was most important to them and their family members, and very rarely were multiple parts of the health system active in any coordinated way. We could see it wasn’t working, and we could see there was a case for integrated care.
We did a call out to Ontario and 72 consortiums or partnerships responded. We picked four, a rural community, an urban, one focused on mental health, one on older adults, just to get a different view. We also developed a focus on young carers – children who were providing care to their siblings, parents or grandparents. Then we brought in clinicians and staff from different parts of the health and social care systems to listen, learn and co-design priorities together.
What ended up happening was many clinicians said they wanted to ask what was most important to the patient and caregiver, but ‘I was afraid if I asked I wouldn’t be able to deliver on what they
wanted.’ Patients said that often clinicians, organisations and policy makers, think they are fixing the problem, but they are not. ‘If only they would ask,’ they said. The end result is that when you mobilise people together, to come up with the solutions in partnership, the solutions end up providing the answer. By removing barriers to enable co-creation, the outcomes actually provide a direction for where policy will be helpful, where funding can be helpful and how our models of care have to be redesigned.
Last year at IFIC’s ICIC18 – the 18th International Conference on Integrated Care in Utrecht, I was asked to provide a keynote speech to the need for co-design in integrated care. I knew that I could not bring to bear what needed to be said by providing the keynote alone because it would be in-authentic to discuss co-design without co-designing and co-delivering the keynote. Caregiver Carole Ann Alloway accepted to work together to design and deliver our keynote – we knew that by doing it together, the message would be even more powerful. We used Carole Ann and her husband’s experience to illustrate that if health professionals had just stopped and listened to them, and asked them what they wanted, a care plan could have been developed that was coordinated and focused on what was important to them. Also, they would have had two experts join the team and inform decisions. Instead, many days and opportunities for joy were missed, and many healthcare dollars were wasted. View presentation here
When we started down the integration and patients co-design route, we realised that there was a missing voice – caregivers, family and friends. We started off with a strategic focus on integration, then we expanded it to patient engagement and co-design, and now we have expanded it to also include caregiver engagement and co-design. It’s the partnership of patients and families that will help integration realise its potential.
As an organisation, we are doing a number of things; through my role with IFIC as a Senior Associate, we are bringing the 1st North American Conference on Integrated Care to Canada in 2020, and that’s a big deal. The Conference is focused on Co Designing for Health and Well Being with Individuals and Communities. The conference has achieved Patients Included designation, which means that every aspect of the conference planning is co designed, and our intention is to ensure it is co-delivered and co-attended.
The Change Foundation is bringing this conference to North America through our partnership with IFIC and The University of Toronto’s Institute for Health Policy, Management and Evaluation, The Health Service Performance and Research Network (HSPRN) and iCoach along with KPMG Canada. Our partnerships are embedded in a shared set of values in that we want to accelerate integration in North America, and we want to share our learnings to date across the globe – and we want to model how co design brings value no matter your lens in health and social care systems.
As a way to build momentum for the conference, we are developing a virtual community of those already involved in integrated care to learn from each other and to connect with the global network that IFIC inspires and that my Senior Associate role enables us to connect to. Out of the network, we are going to identify roughly 20 case studies to learn about their practices, to share these learnings with the broader network and to feature these at the conference. We are so proud to be supporting
individuals, teams, organizations and communities to thrive in driving integrated care that is co-designed by all of us.
IFIC Senior Associate Jodeme Goldhar, Executive Lead, Strategy and Innovation at The Change Foundation and Fellow of the NHS Horizons Team.