As patients, we have long recognized and known the importance of including our voices to transform healthcare. And now the Canadian Medical Association Journal CMJA (October 1, 2018 article) is also acknowledging the important role patients can play.
There are many examples of hospitals and healthcare providers across Canada, and the world, including patient voices in a meaningful way. In a recent blog post, Dr. Brian Goldman shares how staff at Kingston General Hospital increased hand washing rates by implementing suggestions made by patients. The patients had recommended putting signs up indicating hand washing rates by healthcare professionals. This simple change, brought about by patient input, resulted in hand washing rates going up.
As a patient advocate, I have also seen how patient voices make a difference. This includes (with a lot of work) getting healthcare professionals to speak in plain language versus acronyms when holding meetings with patient volunteers present. Even though these are committee meetings made up primarily of medical staff, it is important to speak in a language that includes patient volunteers versus excludes them in the conversation. The hope being this change of language will continue outside of the committee meetings into their work with patients.
While some of these changes may appear small, over time, the small changes create larger changes. And these are the changes that are needed to truly create patient and family centred healthcare that respects and includes the needs of patients, their families and healthcare professionals.
More work ahead
While I was excited to read the CMAJ article, and Dr. Brian Goldman’s thoughts on patient engagement, I know we have a long way to go. While many healthcare authorities and hospitals now acknowledge the need to engage patients, it is often assigned to one department or a few staff instead of being an organization-wide priority.
Sadly, many patient engagement offices become the patient complaint office, so most of their time is spent responding to negative issues or putting out fires. While there is a place for this, as those voices need to be heard, this is not patient engagement.
Rather, true patient engagement is involving healthcare professionals from ALL levels of the organization.
This starts with training doctors, nurses, managers, patient volunteers, students, residents, and board members, on understanding how to include patient voices in a meaningful way. It’s helping them understand the role everyone plays in sharing patient stories - formally (by the patient) or informally (third-person telling of patient story).
It’s also about making this training, and acting upon the learnings, a priority in terms of time and funding for healthcare staff. And, with all do respect to patient engagement staff, this training needs to be offered from a patient advocate who is living the patient experience and can provide insights and advice from the patient perspective.
My hope is patient engagement and advocacy goes from being on the sidelines and assigned to a few staff, to being part of the culture and vocabulary of all healthcare professionals. This shouldn’t be in conflict or seen as a burden on top of their already high workloads, but rather as a way to decrease conflict, identify efficiencies and truly provide patient and family centred care that includes patient voices in a meaningful way.