Thursday, October 25, 2007

New York City Health and Hospital Corporation Community Advisory Boards

In 1970, when NY City Health and Hospital Corporation was created to operate the city’s municipal hospitals, a provision in the state’s enabling legislation mandated that Community Advisory Boards or CABs become an integral part of the HHC framework.

Since that time community members have been involved in the needs of the community as it relates to health care and the relationship to NY City hospitals.

This means that NY City Health and Hospital Corporation is actually the grandfather of the patient and family involvement in healthcare which has been becoming a fast growing movement in this country, and now in the world.

Some other places you may find patient and family involvement are:
The Institute of Family Centered Care, founded in 1992 mission, in part is to work “In partnership with patients, families, and health care professionals from many disciplines, the Institute for Family-Centered Care promotes the understanding and practice of patient- and family-centered care.”

In the late 1990’s Dana Farber Cancer Institute founded adult and pediatric Patient and Family Advisory Councils to serve as a "voice of the patient" for patients and family members of patients.

The National Patient Safety Foundation founded the P-FAC, Patient and Family Advisory Council in the late 90’s and the Joint Commission International Center for Patient Safety started a Patient and Family Advisory Group in 2006 linked to the WHO’s World Alliance for Patient Safety.

But since 1970 CAB members have met with HHC staff to discuss system wide issues, report concerns from the community and recommend policies to the President and Board of Directors of HHC.

One role of a CAB member is to “function as a link between HHC facilities and their community”

Hospitals and patient safety organizations throughout the country are now following in the footsteps of New York City to develop what New York City saw as a workable solution to the problems of the city’s growing population - include the voice of the patient!

For the first time, this group of community leaders, activists and advocates associated with the HHC CAB's are learning about safety and quality. I am excited to be part of it. I suggest the rest of the world begin to stand up and take notice.

Maybe we need legislation before the state gives more money to hospitals and healthcare organizations still not including the patient and family involvement.

Sunday, October 21, 2007

Joint Commission Hearing

I probably just returned from one of the most important things I will do as a patient safety advocate. I was a panelist at a hearing for the Joint Commission.

Joint Commission accredited facilities, found to have standards not met by the surveyor at the time of the survey, can have a hearing to explain (or defend) the surveyors findings. As a member of the Joint Commission Board and Accreditation Committee, I am obligated to be a panelist once or more a year.

I didn’t want to do it. I didn’t want to hear how a facility would try to defend themselves against what could be dangerous circumstances that could potentially harm, or even kill an innocent patient. But I am obligated to. And as a patient safety advocate, I am obligated to understand, for the people I sometimes represent how, in fact bad things can happen.

I also understood that I was not there to make judgment. There were three of us. The two others were actually professional staff members at a similar facility to those who were going to plead their case. I didn’t have to know the details of how a facility is run – they did and they were very good at it.

It was surprising to me how I was able to remove myself from the patient / family role just for the short time to listen, learn and absorb information about the things that can happen in healthcare that most of us, who don’t work in healthcare don’t really understand. I needed to remember that the Joint Commissions role is not to “punish” but in part to report. If you were supposed to lock that cabinet and it wasn’t locked – you did not follow policy – period.

But there also are some gray areas that can be defended with proper guidance of those who know the system and understand the loopholes.

I began to find myself drifting into a land of make believe. What if I was capable of “closing down that facility” as so many patients and families feel is necessary after the death of a family member. What if I could snap my fingers and have the healthcare facility lose accreditation? I began to realize that the people who would suffer are the people like myself who also count on this place to help them get well and offer a community service. Then, I thought to myself, I really do want to help healthcare organizations help their patients. Why, oh why can’t they just follow the rules?

Sunday, October 14, 2007


Yesterday was the anniversary of James’ death. I worry about his mom and think about what brought us together. James died because of his medical care and his mom and family have gone through so much.

It is sad that James died. His mom is a really good lady. I really like her and probably could have been friends with her if we met under different circumstances but sadly, many of the people I meet are people who have had bad outcomes in their health care. I don’t become friends with them all, but a few times I have been blessed with relationships that last.

It breaks my heart that James died. It means that we failed another family. I am - and have been trying to stop deaths like James’ from happening but it still happened. I guess I will feel the guilt too with every injury or death that I can’t stop.

I am sad for James, his family and all the others.

It’s breast cancer month this month. The airline offered lemonade at $2.00 a glass which would then be donated to breast cancer research. I wonder how much money has been collected for patient safety research. How do we memorialize our children? There are no runs or fund-raisers for them. As I get lost in all the pink this month I have to wonder, what about the rest of us?

Saturday, October 13, 2007

My Visit to Idaho

I received my invitation to speak in Idaho many months ago and never really felt the enthusiasm of speaking until after my presentation. In this case, I got to spend 2 1/2 hours with Idaho’s healthcare leaders. I was nervous, as I usually am but in this case, I needed to keep their attention for over 2 hours and leave them with lessons and tools to work with. More important, I need to know that by being there, the people in Idaho will be safer because there will be a better understanding of the patients needs. I loved the extra time and got as much out of working with this group in an interactive setting as they may have gotten.

I was lucky enough to share a car ride back to the airport and then spend time in the airport with some attendees. We got to share more information and had a dialogue about some of the work they are doing. I was told by one hospital leader that he "will never forget" my presentation. He didn't have to say that. All I do is tell stories that I hear from others.

If telling stories matters, than don't we all have them? Is it the way we tell them that matters? I like to share people’s stories and the lessons learned. Everyone should have a voice but many can't use it. I will tell their story, for as long as they let me and anyone wants to hear.....

Saturday, October 6, 2007

Another Story Makes the News

Another story makes it to the news. A Long Island woman had a double mastectomy and didn’t need it. She never did have cancer the article in Long Island Newsday reports.

The story doesn’t shock me. The fact that it made the news - does. Why, we often wonder do some stories make the news and some don’t? If they all did, surely the country would be in more of an uproar about the problems with safe, quality care than it is right now. Newsday tracked down another woman also suffered similar fate. She went through unnecessary radiation. Maybe if her story became public this may not have happened another time. No one knows how many more similar life altering experiences are out there.

We read these articles and find them sad and even anger us but then, we leave the newspaper behind. This Long Island woman can’t just change the channel and turn off the news about what happened. Like millions of others who suffer from medical errors, she will live with it every day. From the moment she wakes up in the morning until the moment she goes to sleep at night she is forced to live with what someone else did to her – someone who works in the same system we all trust.

Because the damage done to her, what about her future doctor appointments; her test results for herself or her family? Will she ever trust the system again? The emotional mess that this will cause her won’t ever be reported because in just a few weeks, it will be old news.

Medical errors seem sporadic because that is the way they are reported. If we allowed all those who suffered to speak out, and listed the names of all the dead, it would fill volumes.

And let’s not forget that the doctors, hospitals and even the lab is being paid for these services. I’m sure no one offered her a refund or her insurance company a refund and chances are, her insurance company wouldn’t ask for one. So, now there is one woman out there who did not get her lab results in a timely manner and was walking around with breast cancer and didn’t know it and another woman who had multiple surgeries and didn’t need it. If you want to know where the real drain is on our healthcare system-there it is!

Read the Newsday article here:,0,309488.story

Friday, October 5, 2007

Night Shift

I recently spoke to the evening and night shift at a local hospital. I was really surprised to find that the staff weren’t very familiar with the patient safety information that is offered to the patient upon admission to the facility. Some of the questions I ask, and they can win prizes for answering correctly, is information taken directly from the admissions office, usually information found in the Speak Up brochure tucked nicely into a folder.

At first I thought they were just being shy and not responding. But then I realized it really was foreign to them.

There is no point in even trying to blame anyone or any system for this missing piece. Obviously this health system cares enough about the potential problems that could arise to ask me to come in. What did bother me is that how many healthcare institutions aren’t aware of the lack of information getting to their night shift when it comes to patient safety information, or any other important information. I hope they are reading this!