Like most doctors, I can remember the first time one of my patients walked into my office with a stack of printed papers in her hands and a long list of questions—all derived from the newly emerging world of the Internet. Managing these types of interactions could feel daunting and even a little threatening but they were the start of something new: Patients and providers were beginning to engage with one another differently.
Since then, the Internet and related technologies have fundamentally changed the way we interact with each other. Now, instead of looking at printouts, I simply turn my desk monitor and sit with my patients to search the Net or review their health information together. It’s a joint effort.
What’s more interesting still is seeing how patient engagement has moved beyond individual patient-provider interactions on the front lines to the system level, with patient advisory councils within healthcare organizations, and government-based initiatives and plans that prioritize patient voices.
In early February, Dr. Eric Hoskins, Ontario’s Minister of Health and Long-Term Care, launched the next phase of the government’s action plan for healthcare. He shared the podium with a representative from Patients Canada as he discussed “Patients First: Ontario’s Action Plan for Health Care” and the government’s intentions to transform the province’s health system into one that focuses on patient experiences by putting patients at its centre.
At Health Quality Ontario (HQO), where I work, we now routinely seek patient input and leadership in helping define and advance our work.
It goes without saying that patient engagement has great transformative potential. However, the concept (and the way we should practise it) is still in its relative infancy. There are a few important questions we need to collectively consider and address.
How do we best prepare providers, patients and the public for patient engagement?
Providers are still learning how to work as inter- and even intra-professional teams to better understand their respective knowledge and skills in relation to patient engagement. As a provider, I know I want to meaningfully engage with patients, family members and even the public more broadly. (I am not alone in this respect.) But simply “commanding” or “expecting” health system providers and leaders to engage with patients is unrealistic. We need to invest in preparing people for this work and giving them the necessary tools for success. This preparation needs to start as early as during the school years (just as we are doing for inter-professional care); and for those already in practice, we must figure out to how play catch-up in a realistic and efficient way.
We also can’t expect patients and the public to easily engage in a system that often appears complicated in structure, culture and language, without offering help. We must explore ways to commit significant resources to making our work and our world accessible so that patients can also participate in a meaningful way.
How do we engage patients more broadly?
The patients we need to hear from the most are often the hardest to reach. Those who face economic, social, language, cultural, physical and psychological challenges to engagement will need thoughtful and respectful partnership efforts. Involve is one Toronto-based project that is currently targeting difficult-to-reach populations in order to help health planners design services that are universally effective. It’s a combined effort on behalf of the University Health Network’s OpenLab and WoodGreen Community Services, sponsored by the Toronto Central local health integration network (LHIN). By working with diverse, often under-represented populations, this project is one example of how care can be transformed from the patient level up.
How do we make sure that patient engagement is meaningful?
Just as health information on the Internet was hopefully a means to improving health outcomes by increasing health knowledge, so too must broader patient engagement lead to better outcomes. We cannot engage for the sake of engagement. We need to engage in a manner that improves the quality of care people receive in a meaningful way.
Having patients show up with printed sheets from the internet was a change that created some discomfort for providers in all professions. The path to broader engagement also represents potentially disquieting change – especially if we commit to meaningful engagement. As efforts to spread this change extend to embrace individual providers, organizations and larger system initiatives the need for openness and in fact courage is going to be a pre-requisite