Rocky Marciano and Health Care for All's Consumer Health Quality Council

The boxer Rocky Marciano retired young, at age 32, unbeaten after 49 victories.  So, too, with us:  we disbanded the CHQC this week after a six-year run.  Or maybe we were more like Sylvester Stallone's Rocky:  we got heart, and we always felt like the underdogs, even if, like Rocky, we were oddly fated to have a Hollywood ending.  

Our knockouts:

Successfully advocated for laws regarding: Patient and Family Advisory Councils (PFACs) and Rapid Response Methods (RRMs) in all Massachusetts hospitals, public reporting of infections and serious events, nonpayment for care needed following a serious event, checklists in all Massachusetts hospitals, apology and disclosure following medical errors, shared decision-making, and tracking and reducing harm from CT scans.

Established workgroups to track implementation of PFACs, RRMs, public reporting and nonpayment. Created a PFAC informational web page and a hospital PFAC web page with links to all hospitals' PFAC annual reports. Gathered and analyzed hospitals' PFAC reports and wrote a summary report on their 2011 PFAC reports. Requested information on the use of Rapid Response Methods from all Massachusetts hospitals and created a Rapid Response Methods web page.  Sent written comments to the Department of Public Health following the release of reports on infections and serious events.

Created a website, The Assertive Patient, with resources for consumers who have had difficult healthcare experiences. The site includes a list of all Massachusetts hospitals with information on how to file a complaint or air concerns.

A story bank of written and videotaped healthcare stories from Consumer Council members about difficult healthcare experiences and how those impacted hope to make a difference in improving care.

Bravissimo! from me as former president, to our current and former Dream Team members:

Dalia Al-Othman

Linda Burgess

Celestine Cox

John Evers

Myra Fournier

Ginny Harvey

Barbara Holtz, Vice President

Linda Klein

Laura Liebster

Kuong Ly

James Madden

Lisa Nash

Dori Peleg

Elizabeth Pell, former Vice President

Joseph Prates

Lucilia Prates, first President

Linda Roberts

Keely Sayers

Margot Schwartz

Kim Slack

Marla Stein

Jamie Stevenson

Jen Tosca

Nicola Truppin, President

Deb Wachenheim, HCFA Health Quality Manager

Lee Weinstein

Su Yoon

Alec Ziss

Thanks to Deb Wachenheim for the summary of our accomplishments, and for her dedication throughout.

There can be a big payback: Testimony on Massachusetts state funding for patient safety

This was my testimony today on state funding:

Secretary Bigby, Commissioner Auerbach, and other executives,

Thank you for the opportunity to testify.

I'm Ken Farbstein, President of the Consumer Health Quality Council of Health Care for All. We'll submit more formal written testimony to add to this personal oral testimony.

Our Council is mostly people who had a serious medical error in their own family. At our last meeting, my friend Kim came and told us about his mother's death from a hospital acquired infection. (I'm glad the DPH is reporting those, as that can persuade hospitals to become safer.) And we heard from another man, Lee, whose girlfriend died needlessly in a hospital. If the Rapid Response Methods section of the law had been in place then, and if he knew about it, she might well be alive today. (I'm glad that DPH can collect information about hospitals' use of Rapid Response Methods.) One of our long-time members didn't come to our last meeting, because her new leg prosthesis was still uncomfortable. She needed one after more than 20 operations following a very serious hospital-acquired infection.

Yesterday a work group of our Council reviewed the hospitals' plans for their Patient and Family Advisory Councils, required by Chapter 305. We were happy to learn that consumers on one hospital's advisory council got the hospital to extend visiting hours to 7x24, so family members can be with their loved ones when they're most vulnerable and afraid. If all hospitals plan and conduct these advisory councils, a lot more good ideas like that will become reality. If DPH can help make those ideas known – IF they have money for someone to look, and discover them, so much the better.

I firmly believe that reporting errors keeps providers more mindful of the need to make their systems safer. It doesn't take much of DPH's time to gather and report that, and there can be a big payback. Of course, DPH needs the funding to keep doing that. I hope you give them, and the Betsy Lehman Center, what they need.

Advice: It's a citizen's job to keep his mouth open.

Read another story about Chapter 305 testimony.

Visiting Hours Are NOT Over: Innovative Patient/Family Council Hospitals in Massachusetts

In my role as President of the Consumer Health Quality Council, I had the privilege of participating in a training session for Massachusetts hospitals yesterday on starting their patient/family advisory councils. These speakers mentioned specific improvements in partnering with patients that their councils have already inspired:

Susan Shaw of Children’s Hospital of Boston described many changes, e.g., the welcoming patient guide, the redesign of Family Sleep Space, and "Executive Family Walk Rounds," among others.

Karen Conley described how South Shore Hospital has greatly extended its visiting hours, focusing on the Emergency Department, Intensive Care Units (ICUs) and PACU. In the past, every evening the loudspeaker would intone, "Visiting Hours Are Now Over," forcing family members to leave their ill, scared, and vulnerable loved ones at their moment of greatest need. After this announcement was eliminated, the number of formal grievances fell by 94% from one year to the next! South Shore Hospital began using family-initiated rapid response teams in June (I hope to report more on this soon) and has several other very exciting ideas in development from its council.

At my visit a few weeks ago to the pediatric family advisory council of Dana Farber Cancer Institute, Maureen Connor's team mentioned that parents had asked for and received a washer and dryer on the kids' floor so that the parents themselves could help keep their kids' bedding and clothes clean.

BRAVO TO THESE PIONEERING HOSPITALS! It's worth noting that none of these ideas costs hospitals much, if any, money, and yet mean a lot to patients and their families. I hope patients will tell their primary care providers and friends about these practices, so more patients get their care at those patient-friendly hospitals.

At the Consumer Health Quality Council of Health Care for All, we're asking Massachusetts hospitals to send us their plans as they complete them by the end of the month, so we can learn about and publicize more of the innovative ways that hospitals are becoming more patient-friendly.

Advice to patient advocates: Steer your clients to hospitals with productive and imaginative Patient/Family Advisory Councils.

Read our Council's testimony on the new Chapter 305 law that mandates these patient/family advisory councils. Thanks to Paula Griswold and Effie Brickman of the Massachusetts Coalition for the Prevention of Medical Errors, and Tracy Gay of the Betsy Lehman Center, for organizing the series of conference calls as training sessions. Thanks to Marlene Fondrick of the Institute for Family-Centered Care for sharing IFFC's knowledge and resources in the calls. Thanks for the legwork by Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss of the Consumer Health Quality Council's work group on Patient/Family Advisory Councils.

For all of them on this Jewish New Year, may they be written in the Book of Life.