Archive for February, 2013

Selling Sickness and IOM workshop on Partnering with Patients

February 27th, 2013 2 comments

Whew. This past week has been awesome.  I have been part of two dynamic and very inspiring meetings.  What have I learned?

1. Patient engagement is not an option, it is a necessity. Patients who partner with their caregivers are safer and they have better healthcare outcomes.

2. Don’t just invite me to a an engaged patient, expect me to be one. For patients who have difficulties with that, we need to offer help and gentle guidance.

3. We are all subjects of direct to patient marketing, for medicines, medical devices, hospitals services, and providers. Beware of the pretty pictures and inspirational and misleading messages of medical advertising. It is the goal of the advertiser to get you…a patient, in their grasp. If you pee, breath, eat and sleep, you are a target. Unsuspecting patients/consumers may find themselves taking a medicine or getting a procedure that could cause them harm.

4. Healthcare pricing is out of control and random, and NOBODY really knows the cost of care. It’s time they found out, so consumers can price AND quality compare and make informed choices.

5. “They” think we don’t understand. They being the provider. In their eyes, we can’t comprehend data, the complexities of our bodies, costs, etc. Dropping the paternalistic attitude will go a long way to partnering with patients.

6. There are a lot of well meaning and dedicated patient advocates from all branches of healthcare. Doctors, researchers, pharma employees, Federal health officers, academia, and Hospital systems, etc. But none are more passionate than patients and those who bring the patient’s voice to the table. Patients are the greatest untapped source of healthcare information and guidance. In both of my recent meetings, I used my voice and so did many other passionate generous patients.

7. In a room where patient engagement is being discussed, be sure there is a big representation of patients. Be assured that we will offer valuable information and advice.

8. Informed consent must be just that. No secrets. Use of patient engagement tools, like videos and brochures, and face to face detailed conversations to provide the information needed about recommendations. Patients…do not sign on that line until all of your questions and options have been discussed.

9. Even doctors are fearful of speaking up in the Hospital setting when their family member is in jeopardy. When your loved one is in demise, in the hospital, and nobody is paying attention, YOU RAISE a RUCKUS! In that place and time, nobody is more important than your loved one. Hurting feelings shouldn’t even enter your mind. (The Raise a Ruckus quote came from an esteemed colleague in Patient Safety)

10. Pay attention to the new Choosing Wisely Campaign. Consumers have been getting unnecessary tests, that lead to unnecessary procedures and medicines, that can lead to harm and even death….for a very long time. Consumer Reports in collaboration with the American Board of Internal Medicine is leading a campaign to stop over treatment and overuse of diagnostics that have little or no value in your care and that may lead to harm.

In the past 6 days, I have met some of the most inspiring and pro active patient advocates in this country. I have also learned that many of my ideas and thoughts do matter, and I have used my voice, I hope effectively, in meetings with these people. There is a lot of passion and courage in those meetings. We “patients” are courageous, but so are the representatives of the healthcare industry. If they didn’t care or weren’t prepared to engage, and make meaningful changes, they would not have been in the room. There is a definite shift, and it is good. Everybody gains in the rich conversations between patients and providers, in these meetings. If that is reflected in relationships between providers and patients behind closed doors, one patient at a time,  then all of us have made a difference.

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Maine Quality Counts Consumer Advisory Council

February 16th, 2013 2 comments

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.