Patient Advocates - Where Do We Fit?

A handful of us patient advocates from Northeast Voices for Error Reduction are just back from this year’s Maine Patient Safety Academy. It was a day-long series of seminars and presentations. Topics ranged from engaging physicians in patient safety, to preventing patient falls, to the waning effectiveness of antibiotics. About 150 medical folks attended from all over the state. There were nine of us patient advocates.

Christian John Lillis of the Peggy Lillis Memorial Foundation
(PeggyFoundation.org) speaks about losing his 56-year-old mother to
C-diff infection 6 days after she took antibiotics for a dental visit

We were invited after one of us, retired RN Kathy Day from Bangor (who lost her father to a MRSA infection) asked organizers if we could take part. She'd attended last year and felt we could learn from each other. Consumers Union (a branch of Consumer Reports) Safe Patient Project supplied travel funds. We all re-arranged our schedules and drove hundreds of miles to Portland, from as far away as Buffalo. (Yes, we're that eager to help drive the conversation about involving patients in their care: “Nothing about us, without us”.)

The invitation did not necessarily come with the certainty that everyone (or even the majority) of attendees from the medical profession would be enlightened about where we patient advocates fit in, what we can offer, or how to approach us. Like newly-made acquaintances invited to a longstanding family reunion, there was, if not wariness, a certain awkwardness, seen when speakers would preface remarks by asking for a show of hands who was in the audience. “Physicians? RNs? PTs? OTs? Social Workers?” More than once, someone in our group piped in (when it was apparent they wouldn’t ask), “Patient Advocates”? (Since this was our first time attending, I'm thinking this was understandable.)

I found the stage play at the end of the program, with actors interacting as various members of the medical team recreating actual events, the most enlightening presentation of all. This is where the true degree of dysfunction and poor communication within medical “teams” was brought to light. Keynote speaker Suzanne Gordon, author of First Do Less Harmproduced this eye-opening look at how staff who now operate in parallel but separate silos need better “team intelligence” – training to better communicate, trust, and support each other (what a concept!).  Though seeing the full extent of the problem was disturbing, I always feel it’s better to know the enemy. The “enemy” is self-centeredness, poor communication, lack of mutual respect, and not believing others can learn or do better. This is what sabotages the best efforts of well-meaning clinicians and puts patients at risk. This is what we all have to combat every day…as a team. And it’s the patient advocate’s challenge to demonstrate that without incorporating the patient’s point of view, this team can never be complete.

The patient safety movement is like any wave of social change…from civil rights, to gender equality. It requires a change in an entrenched mindset and an acceptance of a group that had historically been seen as “other” to be thought of as "equal" (not in terms of training or role, but in terms of respect) within the culture. This movement needs both its noise-makers to push the envelope, and its conciliators who respond with exceeding patience in the face of comments made in ignorance (which, by definition, is uninformed). Emotions fuel responses. How can they not? We have lost people we love to medical harm. We are impatient. Others die every day, even as well-meaning people at summits and conferences talk about why, and how to fix it.

But let’s look at the positives from this event: we patient advocates were invited. We got to present a panel discussion. We were given a table in the lobby to display our books and projects. (Yes, literally, a seat at the table).

In the world of provider and patient/family engagement, the relationship between us is still in its nascent stages. We patient advocates, like medical professionals, have different life experiences, approaches and temperaments, and unique gifts to offer...but common goals. We need to get to know each other. Sometimes our interactions may be tentative, or clumsy, or less than they could be.  But each overture, each interaction offers us an opportunity to build trust, respect and relationships. 

Just like that newbie at the family reunion. If we work at it, maybe some day we won't be newbies any more.