As patients, we tend to assume that our role is to be passive and let the health professionals take charge. We may take for granted that our health care providers are keeping track of our progress, communicating with each other, and ensuring that all our needs are met throughout the entire care process, particularly when we’re moving between different doctors and health care facilities.

But there is a longstanding issue in health care where transitions in care are concerned. There are very few complex medical issues that don’t span several different providers, and while each doctor may know their piece of the puzzle and provide excellent care, they don’t always fully understand what the other pieces are and what happens after their part of the work is done. Unfortunately, ensuring continuity of care is rarely done well.

Add to that the fact that conditions and medications aren’t always properly or fully explained, and it’s easy to see why transitions between care can be difficult for patients. They are not given the information and resources they need to truly understand the next steps and the challenges they are likely to face.

Ideally, health care providers learn what matters most to their patients and what “living well” means for them. It could be about the quality of their relationships, sense of self, community engagement, or the ability to continue doing cherished activities. This kind of patient-oriented care planning demands a higher level of involvement with patients and caregivers, but too often physicians lack the experience and time to do this in a meaningful way.

Clearly there are systemic issues that need to be addressed within the health care system — and that work is being done — but in the meantime, there are proactive steps patients can take to become more empowered throughout their care journey.

  • Learn from other patients. Connecting with patients or caregivers who have had the same experience can be incredibly helpful. Sometimes disease-related charities offer patient or peer support groups, and you can find blogs or online patient stories on sites like

  • Have someone accompany you. This is particularly important when you’re having key meetings with your health care providers. It’s good to bring someone along who can help you understand information, take notes, ask questions, and later help you recall and digest what your physician said.

 

  • Get access to your patient record. Sunnybrook’s MyChart is a good example of a patient-facing electronic health record that gives patients access to test results, the notes of doctors and other clinicians, care plans, upcoming appointments, and other important resources. Developed at Sunnybrook, MyChart has now been adopted by many other hospitals and health organizations in Ontario.

  • Keep a diary. MyChart provides a platform for keeping a log and, if you wish, sharing it with your health care professionals. But even if you don’t have that resource available to you, you can still jot down the details of your visits with doctors, the medications you’re taking, and how you’re doing from day to day

 

  • Ask if there is a care map that describes your likely journey. If this exists, ask if it can be shared with you so everyone is on the same page.

 

  • Take advantage of toolkits.  There are very useful toolkits like the Patient Oriented Discharge Summary (PODS) available to help involve patients with their care and discharge planning.

  • Use a patient navigator. Some organizations offer professionals or volunteers who can help you navigate through your treatment journey. Ask if a patient navigator is available to you.

 

  • Ask questions. You aren’t expected to know or understand everything about your medical condition, so if you have questions about any part of your treatment plan, don’t be afraid to speak up. Write out your questions in advance so you don’t forget anything important once you’re face-to-face with your doctor.  

Neil Stuart is Adjunct Professor, Institute of Health Policy, Management and Evaluation, University of Toronto, and an active board member of Patients Canada. He is also chair of the Patient and Family Centred Care session at HealthAchieve this November 6 and 7, where transitions in care will be discussed and considered from varying health care perspectives.