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Posts Tagged ‘Maine Quality Forum’

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).

http://www.mainequalitycounts.org/page/895/who-we-are

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.

Maine Hospital Association stand on public reporting 2008

March 15th, 2010 No comments

http://www.themha.org/advocacy/LD1939.htm

This link to the Maine Hospital Association’s page and their stand on public reporting in 2008 shows how long they have been fighting meaningful public reporting of Hospital Acquired Infections.
This lengthy and detailed argument written by Mary Mahew (who I became quite familiar with at Health and Human services committee hearings) touts the existing public reporting that is already done through the Maine Quality Forum. There is quite a long list of “reportables” that are made public by the MQF, but if one takes the time to examine the type of those reports, hardly any of it is OUTCOME reporting. Most of the “reportables” are process measures like giving antibiotics at the right time, cutting hair correctly prior to surgery, etc. Only one reportable actually discloses infections and those are Central line infections.
CLABSIs are only 10% of all MRSA infections.
The infections reported on the MQF are a very tiny representation of the number of infections in our hospitals.
Other infections include SSI (surgical site infections) UTI (urinary tract infections) pneumonia, meningitis, mediastinitis after open heart surgery, osteomyelitis, meningitis and oh so many others….all can be caused by MRSA and other microorganisms that hospitals can grow and spread.
It’s obvious why the MHA doesn’t want to report these infections. It will force hospitals to expose their sore spots and may hurt the bottom dollar. But, thier job is to make people better, not sicker. Nobody should ever go into a hospital for a simple problem and because of infection that is not controlled in the hospital, they get sicker and suffer or die. It is absolutely not excusable.
Also, if hospitals are mandated to report and the reports are public, they will COMPARE, COMPETE and IMPROVE.
MRSA and other Hospital Acquired infections can no longer be hidden under the protective shroud of the MHA, Hospital administrations, Epidemiologists, and others. They need to be brought out into the light of day, exposed, and conquered. Hospitals cannot afford, financially or with loss of reputation, to ignore the number of patients who suffer and die each year from preventable infections.
The CDC, and other infection control agencies now support public reporting of all hospital acquired infections. The MHA needs to reevaluate their public reporting stand and be prepared to expose Maine Hospitals’ underbellies…for the good of patients.

Consumers Union, Safe Patient project, Maine Screening program

December 2nd, 2009 No comments

On November 17 and 18, I attended an event sponsored by the Consumers Union, Safe Patient Project, titled “To Err is Human, To Delay is Deadly”.  Other activists and advocates very similar to me, attended and participated in panels.  Victims and organizers also attended.  The CU has the momentum to make  difference for patients and their safety.

I was inspired by the work and the level of dedication of these activists.  Most of us work alone with no funding and our goal is simple, to protect vulnerable patients from harm when they are being treated in our nation’ or State’s hospitals or by our doctors. It is little to ask or expect.  We pay a huge premium for care and we deserve the best.

The work of the Maine Quality Forum MDRO metrics group regarding MRSA  has culminated in a plan for a “Point Prevalence Test” .  This is the approach they have chosen rather than just going ahead with a good solid MRSA screening program.  During this ”test” we will screen known high risk populations for MRSA only on admission  for 6 months.  Then each and every hospital will report their results.  If at those hospitals, any population tests less than 7% positive screenings, they will eliminate that high risk population from the populations to be screened from that point on.  This sounded reasonable until I figured out that only 5% MRSA positives of the over 4000  transfer patients to EMMC has each year would be 200 patients colonized that would be admitted with  undetected MRSA colonization. (Only 1% would be 40 patients).   200 or more patients would go into EMMC each year colonized with MRSA colonization facing a myriad of procedures, or surgery, or other risky events that could leave them infected and disabled or dead.  Colonized patients are 7 times as likely to suffer an active MRSA infection.   200 patients would not be isolated and so could spread MRSA to other patients who are roomed with them.  This is not acceptable.   The goal should not be to do a test and eliminate high risk populations for screening purposes. The screening program should have the goal of finding all colonized patients.  Any percent of patients testing positive should validate a high risk population for screening purposes. On top of that,one single MRSA active hospital acquired infection in any population should trigger the beginning testing in that new high risk population.

If however there are no positive MRSA screenings in any particular high risk population after a full year, it would be reasonable then to eliminate them from screening.  If  in that facility, any patient in that High Risk population or any other population has an active hospital acquired infection at any time beyond that, that population should be added back into the high risk screening program.

So, after all these months of debating and negotiating in the MQF, we now have a plan that has potential to self destruct within the next 6 to 9 months. We also have a plan that has no method of determining efficiency.  Screening on discharge is the only way we would know if a pateint has become colonized or infected while hospitalized.  Our law says that  “hospitals will do surveillance on high risk patients”.  It does not specify that the surveillance would be only on admission.  Most patients are at increased risk for colonization or infection because they going into the hospital or a particular hospital department.  We should re screen these patients one week into a hospital stay or on admission into the ICU, and on discharge.  THIS ADDITIONAL SCREENING IS THE GUAGE ON HOW EFFECTIVE INFECTION CONTROL FOR MRSA IS IN A FACILITY.  It is exactly what the VA hospitals all across the country are doing.

6 months isn’t  enough time to evaluate if the screening and the other preventative recommendations are stopping MRSA or even decreasing it.  It will take a year or two to know if a program is working.  Of course, most of my proposal for Active Detection and Isolation was tossed in HHS committee hearings.  In it’s place the ESO (Epidemiologically Significant Organism) draft was accepted.  It is a generic prevention program that may help, but it really does not clearly address specifics of MRSA prevention.  The specifics are in there, but  they are obscure and subject to interpretation.  ADI specifially outlines the steps necessary to stop MRSA.  All of ADI was included in my original proposal but it was considered “too cumbersome” for our hospitals.  That’s too bad, because it works when enacted.  It will take at least 2 years to see if this ESO draft and this limited MRSA testing will work.  I am not confident that it will.  One can hope it will……

This work is frustrating.  Advocates and Activists don’t have access to accurate numbers of MRSA and infections or deaths because of it.   Most of us have a family member that has either died or become disabled because of it, or have had MRSA ourselves. Because of our loss and troubles we have come in contact with many MRSA victims or their survivors, but we never have the actual numbers of patients effected by this horrible scourge.   Keeping the number of infections a secret by not reporting them (and making the numbers public )allows hospitals the advantage of knowing the “data” and the rest of us are kept in the dark. This puts anyone like me, who is  trying to improve patient safety with work toward prevention, at a disadvantage.   This secret keeping about data doesn’t have anything to do with prevention or saving lives…it has to do with power and control and elitism.  It also has to do with lack of transparency and disclosure. And it has to do with outright fear.  Hospitals are more afraid of liability than they are of almost anything else.   I did not know the rate of patients who test positive in current MRSA screening programs in Maine hospitals when I agreed to the 7% rule.  Since the day of that meeting, I have written to both of the biggest medical centers in Maine.  One responded but did not answer my question and the other did not respond.  So much for transparency or collaboration.

I have all kinds of time.  I am retired.  I don’t require a paycheck.  I have a home office…my laptop, my printer, my phone  and my lazyboy.  So, I am prepared to keep working at MRSA prevention until I believe Maine hospitals have it right. I do not believe they have it right yet.  When rates drop and our hospitals are safe and infection free, we will all know we have it right.

MRSA in Maine, WGME report

October 30th, 2009 No comments

This is the report done by Greg Lagerquist of WGME Portland, ME about MRSA in Maine.  Greg did a thoughtful and intelligent report about Maine’s MRSA problem and the work that MSNA, Rep. Adam Goode, the Health and Human Services Committee and I have been doing to solve it.  Please feel free to comment.

http://www.wgme.com/newsroom/top_stories/videos/wgme_vid_1131.shtml

UPDATE…Apparently, this link to my WGME interview doesn’t work anymore.

Maine Quality Forum Decision, LETS DO A STUDY

September 18th, 2009 2 comments

When my bill passed into law last spring,  there was a stipulation that the Maine Quality Forum would “define” what populations were at high risk for MRSA in Maine, for the purposes of screening.  This task was assigned to us by the Maine Health and Human Services Committee.   I attended meetings for 5 months and I worked diligently between meetings researching this subject.  I presented a solid list of known populations at risk for MRSA.  I gathered  this information from the CDC information and hundreds of other sources.  I never attended a meeting uninformed or unprepared.

I withstood stonewalling, dishonesty, reluctance and downright hostility in these meetings.  I took verbal beating repeatedly and with grace.   Without the refereeing of our leader and my  dedicated Maine State Nurses Association collegue, my pursuit of safer hospitals in Maine would have been much more difficult.  There is no doubt in my mind that they were trying their best to wear me down.  They thought “she will go away afer a while”.  Wow, they do not know me. 

The Maine Hospital Association and their associates, APIC (infection control professionals), and the MQF DO NOT WANT TO DO HIGH RISK SCREENING FOR THEIR PATIENTS.  They will tell you they are already doing it, or it is too expensive, or it is too cumbersome, or there is no need because they are improving handwashing,….my goodness, I can’t begin to complete the list of excuses I have heard.  The fact is that the MHA and APIC have lobbyists and money and they are fighting this effective approach to MRSA prevention tooth and nail. These associations and the MQF are the very people who should be making our hospitals safer.

What this all really boils down to is that Hospitals and doctors  do not want to be told what to do.  Another thing they don’t want is to be liable for an excellent MRSA Prevention program.  If patients have an increased expectation of hospitals and Active Detection and Isolation becomes standard practice in Maine, they will be held to it!  This means increased litigation for MRSA victims if the hospital fails to meet the standards.  Well, hells bells, why not?  Maine Hospitals are responsible if patients become infected on their watch.  They either improve safety or they are liable and there will be lawsuits!

 Maine hospitals  think they are doing a bang up job with MRSA prevention.  While I do recognize that some efforts are being made to stop MRSA, it is not nearly enough.  Why just last week I talked with a woman who had over 100,000 dollars in medical bills after her hospital discharge . She got MRSA, C Diff, and pseudomonas during an over 100 day stay at the local hospital.  She is still paying her bills off and she still suffers ill effects from those infections, but fortunately, she survived.   Another person  asked my son for my contact information because her father died 2 weeks ago with MRSA, same hospital.  So, although they are doing SOME things to improve prevention, they are not stopping the infections.

One  reason for this is that their screening protocol is not wide enough, and that is likely the same problem in all the hospitals in Maine who are still seeing new infections regularly.

Another reason is that they continue to room infected or colonized patients with uninfected pateints. I brought this up at the last MQF meeting and I got jumped on by 3 or 4 nurses all with similar excuses, including one that basically said that CDC says it is ok.   This  a recipe for disaster.  Your local infection control nurse will tell you that “patients do not spread MRSA, hands do”.  Yes, I agree, this is so.  But contaminated  instruments, uniforms, bathroom facilities  and other environmental contamination also spreads disease, with the help of hands.  And do not ever feel safe about the air you breath.  MRSA can be coughed 3 to 4 feet when a patient has MRSA pneumonia.  I have also read articles that air ventilation systems have tested positive for MRSA.  So, without effective air filtration, MRSA can spread that way too.

Another reason MRSA spreads is because doctors are rationing out treatment to interrupt colonization.  They get to pick and choose the patients who will get this simple treatment before invasive procedures.  The arguments for rationing is that there is some  antibiotic resistance, or that MRSA can come back or any number of other excuses.  The reality is that they are playing God in deciding who will have the advantage of simple decolonization ….if it will be you, or your neighbor or someone esle…. according to what procedure you are having.  This seems unethical to me.  If I am having a gut surgery and I have MRSA colonization, I want the treatment.  I will take my chances at resistance or that it might come back after I heal.  LET ME DECIDE my own fate.  This witholding of effective treatment to prevent active infection smacks of the “Sarah Palin” death panel referrence.  Not that I ever believed anything that Sarah Palin said.  My guess is that if any of the doctors who participated in our MQF work group had MRSA colonization and needed surgery, they would be pushing the antibiotic ointment up their noses and scrubbing their bodies with Phisohex frantically and frequently before anybody touched them!

There are many reasons that Maine hospitals are not stopping MRSA.  These are just a few and they are the ones I have addressed in my legislative proposal. 

I would love to see an ambitious investigative writer start calling all of our hospitals.  Their first question could be “how many patients in your hospital have MRSA now?”  Second question, “how many of those patients came into the hospital with those infections?”  Third question, “what is the prognosis for those patients?”   How long will those patients suffer from these infections?   “Is every MRSA colonized and infected patients isolated from other patients?”  “How high is your handwashing compliance?”  “Have your MRSA infections rate dropped or gone up in the past 10 years?”   “Are you aware of the Veterans Administration MRSA screening program and it’s success in dropping MRSA Infections?”   I want to do this investigation myself, but I have observed how close to the chest ANY MRSA information is guarded within these facilities.   I sat in meetings with representatives from hospitals all over the State and I don’t know any of the answers to any of these questions.  THIS IS THE BIGGEST DIRTIEST SECRET OF ALL IN MAINE HOSPITALS.  And the secret is closely guarded.  Each hospital’s representative in those meetings should have very proud CEOs.  They didn’t spill the beans on any useful numbers for the MQF group.

Two days ago, a unilateral and sudden decision was made by our MQF leader to do a “study”.  This decision was made with no plan, no deadline, no consultant, and no requirements.  After 5 months of pounding out a good solid list of high risk populations for screening, our work group’s direction changed.  It was announced, not suggested.  So, all of a sudden the MQF became a dictatorship, not a work group.  While all of the logistics and details of this “study” are being worked out and the study done and the analysis made and resulting recommendations are decided, Maine patients at high risk for MRSA will continue to be admitted to our hospitals without screening.  The expense of this test could be spent on a new effective screening program for all of our hospitals It is bogus and it is nothing but a stall tactic.  The hospitals believe they have won a battle of some sort.  If I thought for one minute that battle was against MRSA, I would not be writing this blog entry.  It is a power battle they think they have won.  MRSA prevention has little to do with it.

MRSA screening saves lives and stops suffering.  It is the first step in preventing MRSA infections.  Patients with undetected MRSA will continue to be admitted to Maine hospitals, and be roomed with uninfected patients.  Infections that can be prevented with simple decolonization treatment will continue to happen.    Rates will not drop.  And after a hospital allows this to happen to you, you will get the bill for the damages.  You will be billed for care rendered as a result of a preventable infection.

This study is a delay tactic.  This allows Maine hospitals to stall the inevitability of effective high risk MRSA screening.  This allows hospitals to continue doing exactly what they are doing now and that is not enough.  I hold the MQF , the Maine Hospital association and Maine hospitals responsible for every single new MRSA infection that occurs in Maine hospitals  while they are messing about with a study.    This is not what was expected of us in our work group…….we need to start screening now…and without further delay.

I will never give up this fight.  It is much to important to everybody.  My motivation comes from my grief and I will continue to grieve a long time for my special father who was infected by his trusted hospital and died as a result.