South East LHIN
We connected with Paul Huras, Chief Executive Officer of the South East Local Health Integration Network (LHIN) to get his perspective on how research can drive change at the LHIN level and what that means for patients.
What got your LHIN interested in work related to developmental disabilities and complex patients? Why did you think working with the health links and the coordinated care plans was an important approach to try?
Recognizing that complex patients, whether or not they have DD, need a system of care. It’s not just one provider, it is a system of coordinated care. The intent was to identify patients then develop a Coordinated Care Plan (CCP) which includes the patient voice. The clinical needs are put into the plan as well as the individual goals and priorities of that patient. Once that plan is in place, it’s being used by providers, which helps to keep all health care personnel informed about that patient’s needs. It’s a better way to address needs and support patients who in the past would have been seen by other providers separately with perhaps limited communication, which would lead to inefficient use of services and is confusing for the patient and the families. The input of the patient or family is very important; from a clinical perspective, the input of the patient or family also helps to identify what issues are most pressing. It gives the opportunity for health care staff to provide advocacy or to help navigate services and that can essentially bring happiness to a patient. For the clinician to hear what’s important to the patient, this brings the patient voice to the forefront.
What have you been learning through this process, both challenges and successes?
There’s the perception that this initiative is costly, but we argue it’s more effective and efficient for providers and patients. One challenge is helping people understand that this is a different approach but a worthwhile investment. It’s a new way of doing what we should be doing better. We also learned this is more feasible with an electronic medium. SHIIP – or the South East Health Integrated Information Portal functions within Health Link – and it uses algorithms to identify patients with complex needs, such as those with multiple chronic conditions, readmissions, or emergency department visits. The SHIIP includes the CCP in an electronic format, and the other component holds the data and is accessible by the physician or provider in the electronic medical record.
What would be helpful for other LHINs interested in similar issues?
In the SE LHIN they have a regional Health Link table, representatives attend and share their experiences and knowledge, and plan together. The Health Link approach has flexibility and when working with different providers it tends to be easier with some flexibility. The concept of the Health Link and coordinated care planning and how it rolls up may vary a bit. Wide variability might be beneficial for buy in with certain providers, and after a period of time there can be more consistency as partners get more comfortable with and learn from each other.
Commentary from Dr. Liz Grier
I'd like to thank Mr. Huras for his excellent comments and support for the Health Links initiative in the SE-LHIN. Certainly, the emphasis on the "patient voice" has been very important in adapting the CCP process to accommodate patients who have developmental disabilities and their caregivers. Special issues identified in our research include high rates of caregiver stress, impact of life transitions, navigating specialized funding programs within developmental services and the need for adapted communication and sensory accommodations within care settings.
H-CARDD's research showing that 20% of adults with developmental disabilities meet criteria for high cost users in the Ontario health care system supports the importance of adopting a coordinated approach to care. Our project is cross-sectoral by design and involves coordination not only among primary care providers, hospitals and emergency departments but also with developmental service agencies and other Ministry of Community and Social Services programs. The engagement of our local hospitals and of the SHIIP coordinators in ensuring that the CCPs developed through this study are shared within our patient information systems has also been very important.
Since its inception in 2008, the SELHIN Primary Care Council has included developmental disabilities stakeholder representation. As the council moved towards focusing on Health Links programming, the SE region's strong collaboration between primary care, the LHIN, local service agencies, and the Department of Family Medicine at Queen's research unit (the Centre for Studies in Primary Care) has created fertile ground for highly collaborative and 'grass roots' projects such as this one. This foundation is essential to enable these types of special pilot projects which develop flexible, tailored solutions for managing the care of complex, vulnerable populations such as patients with developmental disabilities.
Dr Liz Grier, MD, CCFP, is Senior Advisor, Developmental Disabilities, Department of Family Medicine, at Queen's University
Toronto Central LHIN
We connected with Andrea Tsuji, Senior Consultant, Performance Management in the Toronto Central Local Health Integration Network (LHIN) to get her perspective on the value of research in driving LHIN level initiatives.
What got your LHIN interested in work related to developmental disabilities, “dual diagnosis” and hospital care?
Over the past three years the Toronto Central LHIN has focused attention on the goals of A Healthier Toronto and Positive Patient Experiences, and certainly adults with developmental disabilities or “dual diagnosis” are a part of our community and utilize many different services across the healthcare system. It is important for us to consider how well the system is meeting their unique and complex health needs and what opportunities there are to improve the responsiveness of the healthcare system and improve the individual’s experience of care, as well as that of their families and/or caregivers.
What role does research play in improving health care at the LHIN level?
Research plays an important role in improving health care at the LHIN level by contributing to our collective knowledge and understanding of why things are the way they are. Research builds awareness and brings to our attention information that may not previously have been considered in relation to how well the health system is performing. For example, the H-CARDD research conducted to date has highlighted for us that adults with developmental disabilities in Ontario are more likely to use hospital based services than adults without developmental disabilities. This is important information to consider when planning a healthcare system; it raises additional questions such as, why do they access care through hospitals? Are hospitals the right place for adults with developmental disabilities to receive the care they need? Are there other, more appropriate care options? How can we create a system that makes it easier for adults with developmental disabilities to access care when they need it, where they need it? If not for H-CARDD, these questions may not have been surfaced and considered.
From a LHIN perspective what do you find important about H-CARDD research?
H-CARDD research places a focus on individuals with developmental disabilities, a population that doesn’t always receive a lot of attention, yet who have many complex healthcare needs. One of the findings of H-CARDD research that I have found very interesting and informative, is the proportion of adults with developmental disabilities who are “high-cost” users of healthcare services in this city. This is significant when thinking about the long-term sustainability of the publically funded system. It has also been interesting to learn just how different the experience of care across the health care system can be for an adult with an Autism Spectrum Disorder compared to an adult with Down Syndrome, it is not a homogenous group and the solutions need to be unique too.
Why did you think this initiative is valuable for adults with DD in the Toronto Central LHIN?
I think this initiative is valuable, in that it is asking important questions and it is helping the Toronto Central LHIN, and the health service providers we fund, to identify opportunities and implement the changes necessary to improve health outcomes, enhance provider expertise and capacity to provide necessary services and support positive patient experiences for adults with developmental disabilities in Toronto.
What are some of the challenges in moving research into action from a LHIN perspective?
One of the key challenges in moving research into action from a LHIN perspective is knowledge translation. How do we effectively take research findings and put this into a format that’s meaningful to individuals who are making decisions around health care funding and service planning? The importance of knowledge translation is further underscored when the population or issue isn’t readily visible. For example, individuals with developmental disabilities aren’t always easily identified in healthcare records and available services are often funded by different ministries resulting in incomplete understanding of the individuals full experience and history. Without a full picture of the issue at hand, it can be challenging to convey why it’s important to focus resources on the issue. Knowledge translation is key to ensuring that individuals have the same information and can use that to make informed decisions.
In terms of making this information digestible or meaningful, what do you think based on your experience, what has been a recipe for success?
The opportunity to sit at the H-CARDD Advisory Table with such broad cross-ministerial and cross-sector representatives and to experience the iterative process of presenting the data and getting feedback from community stakeholders to interpret and add context to that data, has certainly been very helpful. Each of the different perspectives around the table has helped to add greater depth and context to the data and has enhanced my ability to convey key details in a way that is meaningful for colleagues both internal and external to the LHIN.
What have you been learning through this process?
This process has reinforced yet again, how invaluable it is to bring together diverse representatives to learn together. Not only does this foster improved communication between us, it also rallies us around a common shared interest which can and does foster opportunities for collaboration. It’s been an opportunity to build shared understanding about the issue at hand, to examine the data from multiple perspectives and then learn about the various ways each agency or service provider is working to address the issue. Where are there similarities, differences, what drives these and how can we leverage each other’s expertise to make improvements locally, regionally and provincially?
What would be helpful for other LHINs interested in taking action to address some of the things we spoke about?
I think one of the most important actions is to simply get involved in the H-CARDD process and be an active participant in terms of reviewing the materials and understanding what the relevance of the research is to the local community. Certainly all of the H-CARDD investigators have been very open to sharing information, eager to see the data used and I think that enthusiasm is something we need to capitalize on and continue to build. I think that continuing to build and strengthen relationships with our colleagues in other sectors is also critical in terms of moving forward – the best solutions won’t come from just one area.