Maine Quality Counts Consumer Advisory Council
Since April 2012, I have met monthly with other healthcare consumers as part of the Consumer Advisory Council of the Maine Quality Counts organization (MQC CAC).
In 2009, I was the lone healthcare consumer representative on the Maine Quality Forum Multi Drug Resistant Organism Metrics (MQF MDRO) committee. I was the only uncompensated volunteer. Other members were infection control nurses from Maine Hospitals, an attorney from the Maine Hospital Association, representatives from the Maine Health Data organization and a couple of epidemiologists. I was there because my father died of hospital acquired MRSA and because of my passion to do stop MRSA infections in Hospitals. My goals were very straight forward and simple. The committee worked on the legislative rulemaking for our new law to screen all high risk patients in Maine for MRSA. I had already spent months working with my State representative, other stalwart supporters and MRSA victims to get that law passed. The monthly MQF meetings were brutal. Without the skilled mediation of our noble physician leader Dr Josh Cutler, the meetings would have been dominated by one physician, who challenged almost everything I said. In our first meeting, he said the new law was “irrelevant” and that was how we started. Back then Patients and/or healthcare consumers were rarely represented on healthcare committees and their opinions were generally disregarded. There was a prevailing attitude that they were doing us a favor. Suffice to say that healthcare committees were not accustomed to having an educated and assertive consumer like me in their midst in 2009. I disrupted their business as usual when I doggedly pursued better outcomes for patients. MRSA infections certainly should never be accepted as “part of doing Hospital business”. I remember sitting in those meetings in 2009 and feeling my face grow red and the pressure behind my ears. I struggled to stay respectful and polite, but I never succumbed to the dominating and paternalistic behavior I was confronted with. When I left those meetings, I was exhausted and so frustrated. We never came to consensus. When we “finished” our work in that MQF committee, it was far from finished. We had not completed the work of MRSA prevention in Maine Hospitals, and it still has not been completed. Because the MDRO metrics committee was shut down, my consumer “position” was eliminated and I was effectively and efficiently removed from the work. I have repeatedly expressed an interest (to the powers that be and through the State and Federal CDC ) in participating in the work on Hospital Acquired Infections in Maine with the Maine Infection Prevention Collaborative, but those requests have not been answered. I often wonder if there is a powerful patient’s voice in those meetings anymore. I also wonder if we have really moved beyond the perception that healthcare consumers are token representatives in healthcare committees.
When I was invited to be part of the MQC CAC my skepticism was well founded…..BUT, these meetings are a complete turn around from the Maine Quality Forum MDRO metrics committee meetings. I sit with other Mainers every month who are all working toward the same goals, but from many different organizational perspectives. We are all seeking safer, better, integrated and accessible healthcare for all Mainers. Staff of the MQC organization facilitate every meeting, and they do it with great skill, discipline and organization. Each of the consumers on this council was recommended by a consumer organization. I was recommended by the Maine People’s Alliance. Others represent the Area Agencies on Aging, the AARP, National Alliance of Mental Illness, Univeristy of Maine, NAACP, Deaf Community, The Homeless, etc. Each of us have already accomplished great things in our chosen advocacy work and together we are unstoppable. Our group is making huge accomplishments for Maine patients, and we are giving them a voice! We are all respectful equals and there are no tokens in this group. Together we are strong, proactive and progressive. The combined experiences and accomplishments of the healthcare consumers in our group are unmatchable. Some of us have begun to share our work and our accomplishments from outside of the MQC circle, with each other inside the MQC circle. How can it be that I have become part of this wonderful group of generous and brilliant Maine healthcare consumers? Most Maine patients will likely never know who we are, but there is no doubt in my mind that they will all benefit from our work.
It is different for me now. My earlier days of advocacy and activism were more contentious, a struggle and very challenging. I left meetings exhausted, angry and frustrated. Now I leave meetings exhilarated and inspired. I contribute and share much of what I have learned during my 4 years of activism and advocacy to this group, and so do the others. This group is a gift and a miracle in my work and my life.