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Guest Editorial on Patients as Partners

Dr. Jean Rouleau, Scientific Director, CIHR Institute of Circulatory and Respiratory Health

When someone suffers a stroke, the resulting damage can be minor or devastating, or anywhere in between. The extent of this damage determines the impact of the stroke on a person’s life and the type of care she or he will need. The path to recovery can vary greatly from patient to patient, but it is always fuelled by rehabilitation.

How do we go about addressing such a diverse patient population? The answer lies in tailoring rehabilitation therapy to meet the patient’s specific needs. To do so, we must expand our view of the role that patients play in their own care.

As clinicians and researchers, we sometimes underestimate patients. We tend to view them as passive recipients of information as opposed to active partners. But if we engage them in shaping and driving their own care, we can accomplish better health outcomes together.

Dr. Janice Eng’s GRASP (Graded Repetitive Arm Supplementary Program), which is highlighted in this edition of Show me the Evidence, is an excellent example of patient engagement. By delivering stroke rehabilitation therapy in a web-based format that is convenient and accessible to patients around the world, she is helping stroke survivors actively participate in their own recovery. They can access the information they need, when they need it, and perform rehabilitation exercises on their own schedule. With the guidance of health care professionals, they can modify the program to meet their specific needs.

This patient-oriented approach could be applied to other patient populations. To do so, we will have to create more opportunities for people to participate in their own care. One of a number of promising approaches is to create family practice groups, which bring together different health care professionals, from clinicians to pharmacists to physiotherapists. They can then work together to teach patients how to take control of their own disease prevention and therapy. Some provinces are already beginning to adopt this kind of coordinated care approach.

We can also empower patients by increasing their access to reliable, personalized health information. For example, patients with diabetes could benefit from customized online resources that would help them participate in their own care and help influence their day-to-day behaviour. At the same time, we must be careful to provide appropriate guidance so that patients don’t make potentially dangerous changes to their treatment.

As we move towards a more patient-oriented system, we need to explore both its possibilities and limitations. We need to learn more about effective methods of knowledge transfer, to both health professionals and patients.

Researchers like Dr. Eng are leading the way.