April 1, 2020

Patient engagement is alive and well during the time of COVID-19

By Minnie Downey, Executive Director and Colleen McGavin, Patient Engagement Lead

Rest assured, patient-oriented research (POR) will survive COVID-19.  As we go forward, there will undoubtedly be a great need for patients and the public to collaborate on research that will help us better prepare for, manage and recover from similar situations that may arise in the future.

Since the outbreak of the COVID-19 pandemic, we have heard that patient-oriented research projects have slowed or have had to be put on hold, like almost everything else, while members of research teams, many of whom are clinicians, courageously redeploy to the front lines of health care or take on roles with the health system to support those who do. Our public health officers are doing an incredible job of keeping the public informed daily – a key element of managing anxiety in a time of crisis. It’s all hands on deck.

We recognize that patient partners, too, are adjusting to the new reality and may be pre-occupied with new responsibilities and concerns for your own health and the health of your loved ones. You may be coping with feelings of anxiety and depression. You may even be grieving the loss of a loved one. We understand that under these circumstances, you too may need to take a step back from your commitments to projects you’re a part of, and we strongly support this decision to make self-care your first priority.

Some patient-oriented research projects are continuing enabled by technology that allows teams to meet virtually. Within our organization, for now, working groups continue to make progress. All these activities will continue to engage our patient partners, as long as people are able.

Of necessity, research funding has been approved and studies have commenced with unprecedented speed. Bio-medical scientists are urgently working in their labs to find better diagnostic tests, treatments and vaccines. Epidemiologists and statisticians are pouring over numbers in order to understand the effects of measures like social isolating and physical distancing. Because of the urgency, these studies, while 100 percent patient-centred, are not necessarily what we would call patient-oriented, but they are needed and they do not signal the end of patient-oriented research. As we move forward, there will undoubtedly be a need for patient-oriented research that can help us understand more about pandemics: how to prepare for them and how to cope; what is needed and wanted from a patient and public perspective.

In early April, we will be hosting a virtual meeting with our provincial Patient Council to ask for ideas about how we can support our patient partner community during this difficult and unprecedented time. How can we maintain our sense of community and commitment to POR? We are also reaching out to our colleagues at other SUPPORT Units across the country and to Patient Voices Network who have launched a survey asking similar questions. Over the coming weeks, we promise to do all we can to keep the flame of patient-oriented research alive.