Some Ontarians confused and frustrated by delays, redundancies and poor communication

Who is the Puzzle maker? Patient/Caregiver Perspectives on Navigating Health Services in Ontario is The Change Foundation’s first health integration report. It draws on several sources: findings from 10 focus groups with patients and caregivers across Ontario who’ve navigated the health system in the past year; results from a general Ontario population survey asking about communication and information flow in the health-care system; a literature review on public expectation and patient experience of integration of health care; and a scan of who is measuring what in health integration in Ontario.

click on any of the images to enlarge it

The focus group participants from Toronto, Ottawa, Kingston, Sudbury and Ingersoll are all current and frequent users of the health-care system, many elderly and those facing chronic illness. They identified the following problem areas:

• Navigating the system: knowing whom to call, what to ask, how to move from provider to provider and back again, connecting the hospital process with the community process, organizing services in one’s home. Not so simple. In a general survey of Ontarians, 54% of people reported that they were not confident that there was a single, lead person in charge of coordinating their health-care services. (Pollara)

• Dealing with repetition, redundancy and delay: repeating medical histories, symptoms, medical records, tests.  A common situation.

• Worrying about communication: wondering whether necessary information has been transferred from one provider to another or one setting to another, not being clear about what happens next in the care process, and who is responsible for what. No communication or poor communication among and between providers, patients and caregivers leads to confusion and anxiety.

• Getting lost in the transition: many of the issues raised above were worse when patients had to move from one provider or organization to another -- from hospital to home or a long-term care facility, for example.

And they had trouble trying to coordinate the health services they need, especially when moving from hospital to the community,” said Change Foundation CEO Cathy Fooks. Fooks added that even when care or co-ordination was excellent, it sometimes seemed to patients and caregivers that it was despite the system – not because of it.

"The results are not meant to assign blame or point fingers,” said Fooks. “We know change takes time and health-care delivery in Ontario in 2008 is complex. The Change Foundation believes the views of patients and caregivers are critical to help connect the pieces of the health-care puzzle, so that good care and coordinated care are not left to luck.”

Fooks added that patients and caregivers also praised the system – especially cancer patients and those whose family doctor worked at a community health centre or were part of a multidisciplinary health team.

The Change Foundation decided to ask patients and caregivers about their experiences moving between and among health providers and services because there’s been little work done in this area. It seemed particularly pertinent to hear whether people got coordinated care from the various pieces of the health-care system, given Ontario is now bringing services together under the organizational umbrella of the local health integration networks, said Donner.

Patients and caregivers – and the Foundation’s research - point to solutions:

• Speed up the implementation of electronic health records so providers can better coordinate patient information;

• Provide access to a professional “care coordinator” or system navigator responsible for coordinating care across settings and providers;

• Increase multi-professional team work and expand the range of health providers such as pharmacists and nurse practitioners;

• Provide better support, information and liaison  for caregivers, many of whom are overwhelmed or burnt-out;

• Co-locate services and establish linkages with primary care practices and other parts of the system, to make it physically easier for people to access;
• Support health providers to undertake process mapping with their institutional and community partners to reduce duplication and delay;

• Offer patients care maps that they can take with them when moving from one provider or location to another.

The Change Foundation plans additional patient/caregiver engagement this coming fall and winter.

Read the Report

"Who Is The Puzzle Maker ?"

click on the above link to read the report