A personal plea for enabling patient engagement

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I was recently asked to speak at a patient-experience forum. As a director for RelayHealth, a care coordination and patient engagement solution and as the chair of ITAC Health (Information Technology Association of Canada), I am quite adept at discussing technology that will enhance the patient experience. However, it is my role as a father, with a child with special needs that provides me with insight and passion that can only be cultivated through personal experience.

I have a lovely 11 year old daughter, Victoria, who has been challenged with several serious medical issues since early childhood. Caring for her has given my wife and me an appreciation of how the patient experience varies from within the acute care setting to the community.

In Victoria’s first year, we almost lost her. After contracting a simple cold, she began to experience difficulty breathing, which resulted in a coma. Perplexed, the doctors at the Hospital for Sick Children explored many possibilities to explain her sudden degeneration.

After much testing and consultation, the diagnosis was Mitochondrial Disease, a metabolic illness which affects the body’s ability to convert food into energy efficiently. This disease renders my child vulnerable to all illnesses, as the assault on her system is much more significant than a battle with a common cold.

All the staff and medical professionals at the hospital were exceptional. They were knowledgeable and empathetic and gave us light in our hours of darkness.

After spending several years recovering from her metabolic episode, Victoria began missing some key developmental milestones. Not knowing whether this new set of symptoms was related to her metabolic illness, we consulted with our paediatrician and our hospital specialists and she was diagnosed with autism. Again, the care Victoria received was outstanding and our patient experience was positive.

Due to Victoria’s complex conditions, we have multiple caregivers in various facilities and at home. The challenge is that her care providers do not share information well and they have no way to securely communicate with each other. For example, Victoria’s complex care plan is routinely faxed between her providers and rarely does the clinician we are seeing have the latest version.

In addition, there is no method for her home care nurse to contact her metabolic specialist or her paediatrician. Keeping all her caregivers in sync is our family’s responsibility. Unfortunately, we are not provided with the tools we need to manage the care for our daughter even though it would make it considerably easier for her care team.

Ideally, there would be a system in place that allows her care team and I to access the same health record summary. It should include her complex care plan, her illness management plan and allow us to track her vitals and make them available to her team.

In addition, we would like to have the ability to securely message her care team instead of placing numerous calls and being frustrated by our inability to connect.
Also, there are times when her specialists need to communicate with each other and we are tired of being the go-between. In short, it is time that our health system invested in solutions that improved the patient experience across the continuum.

McKesson Canada has been delivering such a project in Nova Scotia, using RelayHealth, which is demonstrating the benefits of a patient-centred approach.
Amongst numerous other elements, their global health care strategy provides patients with access to their personal health record, which includes lab results and will also include data from their family doctor. Patients can now securely message their doctors to make appointments or ask clinical questions. The project began with 30 doctors in Halifax and was made available to patients within a few months of the project starting because of the simplicity of implementation.

The patient response has been tremendous. More than 4,000 patients signed up in the first nine months which is much higher than anticipated. Clearly, there is a large pent-up demand for patients to actively manage their own care.

Here in Ontario, I am always very impressed at the level of care we receive from the talented clinicians that care for my daughter. There is no doubt, that as a Canadian system we have made huge strides in patient-centred care within the walls of the hospital. The problem is that more and more care is delivered in the community, and as a system we have not made the investments needed to empower patients and caregivers to provide the best care possible. Rather than mega-IT projects, which has been the norm, it is time for the health system to make smaller, targeted investments that have a measurable benefit to patients.