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.

Accomplishments of Massachusetts hospitals' Patient/Family Advisory Councils

The Patient/Family Advisory Councils of Massachusetts hospitals have made some innovative changes. Here are a baker's dozen of them.

Developed a program in which all medical house officers now rotate through our Simulation Center, receiving didactic and high-fidelity simulation sessions on conducting family meetings. (Beth Israel Deaconess Medical Center)

Launched “Patients as Educators” program to share experiences with small groups of nurses and doctors (Dana-Farber Cancer Institute)

Reviewed quality dashboards and publicly reported quality measures (Health Alliance)

Reviewed quality outcomes and patient satisfaction data (Heywood Hospital)

Helped residents plan family participation in Chief of Service Rounds (Children’s Hospital)

Helped plan an “Appointment Buddy" program that provides volunteer assistance to families of children with special needs (Children’s Hospital)

Participated in training sessions with oncology fellows and residents, so physicians could learn directly from patients and families about the human experience of living with cancer (Children's Hospital)

Installed a Portuguese channel on inpatient televisions (Morton Hospital and Medical Center)

PFAC member became a "secret shopper" to go through the registration process, three members working with hospital staff on the registration, flow and patient handout information (Nantucket Cottage Hospital)

Re-vamped a discharge medication tool to be more patient friendly and easier to understand for patients. (New England Rehabilitation Hospital)

Developed the “Crisis in the Classroom” program, which reinforced the need for mental health services for the community. This program brings experts in child psychiatry and development together with parents and first-responders (teachers, principals, guidance counselors, school nurses, and law enforcement. (Newton Wellesley Hospital)

Helped to design 'the Joanie'- an improved hospital gown that is more comfortable. (Newton Wellesley Hospital)

Developed a process for families who wish to stay overnight to request a cot be brought up to a patient's room (Caritas Norwood Hospital)

Read another story about innovative efforts by patient/family advisory councils.

Thanks to Amelia Russo for compiling the master list, and to Linda Burgess, Nicola Truppin, Deb Wachenheim, and Alec Ziss as our Patient/Family Advisory Council work group members at Health Care for All’s Consumer Health Quality Council.

Radio Program on Getting the Right Care Team

"Caregivers Stories: Getting the Right Care Team" will be broadcast live on Friday, July 29, 1 - 2 pm EST. During Ms. Hari Khalsa's radio show, Ken Farbstein will use stories from his new book to answer your questions and offer:

1. Specific tips for staying safe during medical crises;
2. A general mindset of being an empowered patient; and
3. Ways to partner with your doctors and nurses.

To hear the show on your computer via Internet radio, go to: http://www.blogtalkradio.com/healthcare-whisperer-/2011/07/29/caregivers-storiesfinding-the-right-care-team.

To offer your questions and comments during the show, call: (805) 830-8363.

Ken Farbstein, MPP, leads Patient AdvoCare in Needham, Massachusetts. He has served two elected terms as President of Health Care for All's Consumer Health Quality Council. His new book is Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute. Ken guided his multi-hospital system clients, winning IHI's Premier Award for Hospital Medication Safety.

More than we can imagine: Massachusetts healthcare payment reform

This was the testimony I delivered on June 30 to the hearings on health Care Provider and Payer Cost Trends, conducted by the Massachusetts Division of Health Care Finance and Policy:

I'm Ken Farbstein, a patient advocate with a private practice, and an author of a new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute.

Thank you, Commissioner, for the privilege of learning at these hearings, and being able to testify.

Rev. Hamilton told us that God brings us more than we can imagine. Let's imagine what payment reform will look like in practice. On Tuesday, Amy Slemmer of Health Care for All stressed the importance of transparency, as did yesterday afternoon's panel of speakers. What does that look like? In Pennsylvania, where they've had mandatory reporting of serious reportable events, that reporting has now, they can confidently say, decreased wrong site surgery, according to Mike Cohen, the head of the Institute for Safe Medication Practice. That's pretty good for patients' quality of care. And it reduces costs, because there's no need for physical therapy, prostheses follow-up visits, and so on, to try to make up for the mistake, plus the cost of doing the operation right the second time around.

What else does transparency look like? Harold Miller emphasized yesterday, as did Ray Campbell and others today, about how critical it is to get clear information on price and quality. A one-pager handed to the patient well before any surgery, stating the likelihood that a repeat operation will be needed, the cost to them, the number of similar operations that surgeon has done before, and the alternatives to surgery, would provide vital information. When we brought my dog in for a surgical decision about a lump in one of his front elbows, the veterinarian gave us very clear information about the risks, costs, and alternatives. Her information was much better than the explanations I had received about my own two surgical decisions for my eye, and for my sinuses.

Fully informed, shared decision making will get many people to choose less costly alternatives to surgery, as I did twice. The Cochrane Collaborative documented the cost savings in its recent systematic review of 58 articles in the medical literature.

Impartial patient advocates can discuss end of life decisions that are based purely on preserving dignity and the quality of life. Family members will often prefer hospice care, which is more humane and less costly than "death by ICU." My father had a long gallant struggle with Parkinson's Disease. At the end, he, and we, chose hospice care. That was definitely the right decision for his dignity and quality of his remaining life. It also saved money for the taxpayers.

Yesterday, Harold Miller told us there are 3 ways to reduce costs: prevention, preventing hospitalization, and more efficient hospital care. What do they LOOK like?

Prevention, you know about. Harold Miller also mentioned avoiding hospitalizations. Last night I went to a medical home meeting. There were pediatricians, Nurse Practitioner and another nurse educator, the office manager, 3 parents of kids in the medical practice, and me, with pepperoni pizza, Diet Coke, and champagne - to celebrate a journal article to be published on the successes of the medical home. They showed a homemade video teaching parents about a new alternative to stitches when their kid gets a deep cut. They teased the nurse practitioner who was the star of the video. Their laughter, and their warmth, is a key ingredient of the medical home. That's what home looks like. The video is about DermaBond; imagine a glue stick the doctor will use to seal a deep cut, instead of stitches. Those cuts can be treated in the doctor's office instead of an E.R. visit. No stitches need to be removed in a later visit. These, and many other changes, have enabled this medical home to reduce the E.R. use among their kids over the last four years, by one-third. That's what a medical home looks like.

Third, Harold Miller said costs are reduced with more efficient hospital care. My mother complained of radiating neck pain, so I brought her to our small community hospital's E.R. She was given a telemedicine consult with a doctor at BIDMC in Boston - a 2-way TV hookup that impressed her greatly, and ruled out a stroke promptly. That's what efficient hospital care looks like.

A patient advocate who is fully independent and trusted can help patients and their families make the difficult decisions about how to get their best health care. These images are what payment reform should look like.

Four people in my family: Testimony on payment reform legislation

Testimony at the Massachusetts Statehouse, May 16, 2011
I'm Ken Farbstein, past President of Health Care for All's Consumer Health Quality Council. Thank you for the opportunity to tell you about four people in my family, in stories that are in my new book.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, they'll make better informed choices, and sometimes they'll decide against surgery – which could save money for the whole system.

And near the end of life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. That was better for him, and for us, and it must have actually saved money for the taxpayers too.

My very active Aunt Anne had always lived alone, in Denver, far away from the rest of our family. So she didn't have the family support that helps keep people healthy. She didn't like doctors much, but sometimes she'd see a doctor, just to get a prescription. Perhaps if her primary care provider had had a patient educator on a medical home team, they could have worked out some kind of agreement with her about regularly taking her medication. If so, it[s possible she could still be alive. She died from a complication of untreated diabetes.

My uncle Leon in Florida had a Type A personality. He loved to eat. I doubt he got much exercise. Over the years he developed heart disease, and after he retired to Florida, had multiple stents inserted by the hospitals there. If the system had paid his healthcare providers to keep him healthy, that could have moderated or prevented the coronary artery disease and his fatal heart attack.

So in my family, patient empowerment would have helped. Transparency would have helped. A public health focus on prevention would have helped.

I think many people have the same experiences as my family has had, but I think they happen so often that most people don't even notice them. There are so many people - maybe some in your family? -with diabetes, high blood pressure, asthma, or a substance abuse disorder, or a person who smokes, or drinks more than they should, or weighs more than they should, or doesn't exercise enough. Shouldn't the payment rules encourage providers to keep your family healthy?

The payment rules create a very subtle current that carries us in the wrong direction, so that providers and consultants who want to improve prevention have to make their way against the current, so they can't make much headway. Please fix the rules.

Still waiting: Apology for a medical error

Jeni Dingman's plaint:

Today it will be 16 years ago that I lost my dear and wonderful mother due to multiple medical errors, miscommunications, and a flawed healthcare system that did not pay attention to the needs of patients and families. As there have been some changes in those years, years that I have freely given to a cause that I hope someday will save lives, 250,000 Americans still die every year due to medical error. The most important change has yet to come. It must concern communications, patient engagement, patient empowerment and partnering. This can ONLY occur if we are welcome and invited to participate by our providers. Most of all, patients and families must be listened to. I do not know what outcome might have occurred had clinicians listened to my mother and I so long ago, but do I know that my pain would not be as intense as it is every single day had we not been discounted, written off and ignored by those entrusted by our family to do the right thing. My mother was NOT anxious as the clinicians indicated, she was in trouble, and no one rescued her, no matter how hard I tried to get them to listen, they didn't, and they never ever apologized either, I am still waiting for that apology.

Thanks to Jeni for her source posting to Facebook.

Here in Massachusetts, many members of the Consumer Health Quality Council of Health Care for All have experienced errors in their families, but have not received apologies. We have filed a bill to encourage doctors and nurses to apologize for medical errors. We hope that any upcoming federal legislation about medical malpractice claims would strongly encourage, if not require, apologies.

Read a story about a hospital's apology.

If you have a family member in the hospital: Rapid Response methods

Our Rapid Response Work Group of the Consumer Health Quality Council of Health Care for All will encourage insurers in Massachusetts to publicize an important message to their members throughout Massachusetts. We hope they'll tell people how they can call for a Rapid Response method or team in the hospital, if needed, to rescue a family member whose health is suddenly deteriorating in the hospital. We hope they'll include it in their print and e-newsletters and emails to their members.

The announcement will alert people that certain warning signs often precede, by several hours, a usually fatal heart attack or respiratory arrest in the hospital. "Failure to rescue" is one of the most common causes of in-hospital deaths, so this could save many people's lives.

The announcement reads like this:

Have a Family Member in the Hospital?



Be aware that certain signs can warn that a heart attack or respiratory arrest can occur in the next few hours:

A sustained noticeable change, either an increase or decrease, in their:

Breathing rate;

Heart rate or Pulse; or

Blood pressure;


Or if they experience Confusion.



You can ask the nurse about the specific criteria your hospital uses.

If you see that your loved one is experiencing one or more of these signs while in the hospital, you can insist that the hospital respond promptly with a "Rapid Response Method" or a "Rapid Response Team." That's a new state law (Chapter 305 of Massachusetts General Laws), and is required by the hospital's accrediting body, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO).


Non-Massachusetts residents should realize that you, too, can call for a Rapid Response, per the JCAHO regulations, even if you don't have a state law requiring it.

Read another story about rapid response teams.

Be brave anyway: Marcelas and Tiffany Owens and the Patient Protection and Affordable Care Act

Here's what I imagine the late Tiffany Owens would say today to her 11-year-old son Marcelas, who was beside Pres. Obama at the signing of the healthcare reform bill:

To my beautiful young man Marcelas,

I'm so proud of you! Thank you so much for being brave in speaking for me to all those important men and women. I wish I could be with you.

A lot of people have been yelling at you on TV and blogs. Try not to let that bother you. When you stand up for something you believe in like you've been doing, people on the other side can get mad, especially if you're effective. Maybe, like they say, I could have done things that might have prevented my health from getting so bad, but maybe not. I don't know enough about pulmonary hypertension to know. I'm not sure anyone does. And that misses the point, anyway. The point is that sick people should still be able to be taken care of by doctors and nurses, even if they lost their job, and don't have health insurance anymore. That's what you told all those people, and that's exactly what I wanted you to tell them.

People won't always listen to you as much as they did about this. But you should still speak your mind, with respect. And, of course, you may well never get to the White House again! Don't expect that you'll always be rewarded for being brave – but be brave anyway.

There are lots of people here with stories like mine – 45,000 every year, who died because they didn't have health insurance. You helped to speak for them, too. And you helped to save the lives of lots of people like them, from now on, because of the new law.

I miss you so much, Marcelas! Give a big hug to your Grandma, and do what she tells you.

Much love,

Your mother

Advice: Remember Tiffany Owens.

Read another story.

We've created that: Consumer Health Quality Council's Accomplishments in 2009

As the council president, I had the pleasure of making a presentation about the progress made in 2009 by our Consumer Health Quality Council, at a meeting of the consumer council and our advisory council on Wednesday, organized by Health Care for All:

We've made a lot of progress this year, thanks to the work by you and our other council members. As we start 2010, the signs point to continued progress. To name just three examples both of how well we’ve done in 2009 and how we’re set up to succeed in 2010:

You told me, this time last year, that our biggest priority was the implementation of Chapter 305. We've had notable success there. For example, consider the two work groups that I know the best from my own work: Rapid Response Teams and Patient/Family Advisory Councils. For the first time in Massachusetts, and indeed anywhere in the U.S. to the best of our knowledge, there is an early tabulation of the statewide use of hospitals' rapid response methods to promptly rescue deteriorating patients. We've created that! In doing so, we discovered the first family-initiated rapid responses. We have an emerging strategy of encouraging hospitals through recognizing the ones who've reported active use of the often life-saving rapid responses.

Second, our PFAC (Patient/Family Advisory Council) work group has also produced a first-of-its-kind useful public statewide accounting – of hospitals' plans for PFACs, and a listing of the first changes in extended visiting hours, maps of cardiac care milestones for an inpatient, washer/dryers for patients' parents, to name only three innovative changes. A strategy of publicly commending these innovative hospitals can spread these changes through the state in 2010 – with your continued help. Third, we've benefited from our new members, with more new skilled people coming on board soon. Our new members have been particularly active through our work groups. Kim Slack and others will likely join us in 2010, adding to our capacity.

Read another story about the work of our Consumer Health Quality Council in 2009.

She was finally able to visit a specialist: Hip dysplasia treatment through Health Care for All

Barbara was born with a health condition called hip dysplasia, causing severe pain which affects her life in many ways. She works as a secretary at a landscape company and is a 22-year-old single mother. She can't walk well unless she takes a high number of very expensive medications.

She had been uninsured for two years and suffering without the medications that allow her to function normally when she was helped by a counselor at the Helpline of Health Care for All in Massachusetts. A few weeks after she filled out an application over the phone, she started her Commonwealth Care health insurance coverage and was finally able visit a specialist to take care of her health issues.

Barbara has been in treatment ever since. Pain medication is keeping her comfortable until her surgery scheduled for next month. She will have a hip replacement and the chance of success of her surgery is 98%. She is so excited about her new hip and stresses the important role that Health Care For All played in helping her through the whole process. Here is what Barbara has to say:

"We are so lucky to be Massachusetts residents. My daughter is 1 year-old and she was born with the same problem I have. But thanks to all the health care we receive, her health condition was diagnosed as soon as she was born and she had all the care necessary to fix her hips before she started having severe problems. She used a harness for a period of 4 months which helped to cure her problem. And through MassHealth she has the opportunity to go to the doctor for regular checkups. So I couldn't be happier about the health reform in Massachusetts and all the assistance and care I receive every time I call the helpline."

Advice to Massachusetts residents without health insurance: Call the HelpLine at 800- 272-4232.

Read a story of a young mother in another state who lacked insurance.

Thanks to Monika Lira Malhoit for the source blog post at A Healthy Blog.

You have to ask patients: Testimony of the Consumer Health Quality Council

This was the testimony I delivered before the Joint Committee on Public Health of the Massachusetts State Legislature on June 23:

Thank you for the opportunity to provide testimony on House Bill 2084 and Senate Bill 909, An Act to Reduce Medication Errors in the Commonwealth.

I'm Ken Farbstein, the President of Health Care for All's Consumer Health Quality Council. Nineteen years ago, my wife was about to give birth to my son, in one of the Harvard teaching hospitals. Way up in the same building, we heard that doctors were treating one of the princesses of Saudi Arabia, who was there because the hospital had such a great worldwide reputation. But our team of doctors made a really basic misdiagnosis. My wife got the wrong drug for 12 hours, and she didn't get any pain medication for the first 12 hours she was in labor. We never formally reported either one of these two medication errors – our son was in the NICU for three weeks, so we couldn't think about anything else. I'm bringing up this story now to make a simple point: The vast majority of medication errors are never formally reported within the hospital. To find out about them, you have to ask patients.

Other Consumer Council members have also experienced medication errors that were never reported as such. One member was given a medication by a neurosurgeon that brought on a seizure, even through she told the doctor that she had experienced seizures in the past and knew this medicine was related to their occurrence. Another Council member was never given pain medicine following a surgical procedure, even though she requested it and her doctor had approved its use. A third Council member contracted an intestinal infection as a result of being given multiple antibiotics while hospitalized. To learn about many medication errors, you have to ask patients, and the expert panel required in this bill can do that.

Back in 1999, there was tremendous shock when we learned from an IOM study that 98,000 people were found to be dying of medical errors every year (14,000 of them from medication errors). Then seven years later, we were shocked, again, to learn from the IOM that 1.5 million people a year suffer injuries from preventable drug errors.

We need to fix this. We need an independent panel of experts – which this bill requires - to review what has been learned, what works, and to make formal recommendations within a year, and then embed them in law and ensure that there are sufficient reporting and oversight mechanisms to stop the harm to people and the waste of money.

Thanks for your consideration.

Advice: Together with your supporters, tell your legislators what you care about.

Read our testimony on another bill, or see the short video of the testimony of Health Care for All President Amy Whitcomb Slemmer, and Council members Ginny Harvey, Lucilia Prates, and me.

Thanks to Deb Wachenheim for her legwork in organizing our panel for the hearings.

For all Massachusetts health care consumers: Testimony on the new Chapter 305 law

This was our testimony of Health Care for All's Consumer Health Quality Council before the Public Health Council, presented by Linda Burgess, Nicola Truppin, Deb Wachenheim and me:


RE: 105 CMR 130.000, Hospital Licensure, and 105 CMR 140.000, Licensure
of Clinics

Thank you for the opportunity to provide testimony on the regulations for
implementing sections of Chapter 305, the landmark cost containment and
quality improvement law. Health Care For All and the Consumer Health Quality
Council advocated for this law, and for these measures in particular, and we are
pleased to see steps being taken toward implementation.

The Consumer Health Quality Council is a coalition of Health Care For All. The
Consumer Council brings together Massachusetts residents who have been
impacted by poor quality health care and who are motivated by those
experiences to advocate for health care quality improvement. The members of
the Consumer Council want to work to ensure that what happened to them and
their families will not happen to someone else. The Consumer Council believes
that Chapter 305 will advance patient safety and health care quality for all
Massachusetts health care consumers.

Reporting of Serious Reportable Events and Infections
Many of our comments for both of these reports are similar, so you will see below
comments that apply to both reports and a few comments particular to one report
or the other.

Serious Reportable Events (SREs) are also known as "never events" because
these are events that should never happen in a health care setting. These
include events such as wrong-site surgery and wrong person surgery as well as
very serious medication errors and serious pressure ulcers. All together, there
are 28 events on the SRE list that has been established by the National Quality
Forum. While we all hope that these events are very rare, we know this is not yet
true. We applaud the steps that the Department of Public Health and the Board
of Registration in Medicine have already taken to track and reduce the
occurrence of these events. We believe the public reporting of SREs will not only
educate consumers about the fact that these events do happen and where they
are happening but will also prod hospitals to put in place preventative-based
systemic changes in order to reduce the likelihood of occurrence. We know that
the first hospital-specific report is due to come out in April 2009 and we plan to
do our part to educate the public about the report and how the information can be
appropriately used.

We also applaud the infection prevention, reduction and reporting work that has
been under way for some time under the direction of DPH and the Betsy Lehman
Center. A number of the Consumer Council members have been profoundly
affected by hospital-acquired infections and we look forward to seeing the first
public report on infections which will be released in April 2009, with the first
hospital-specific report coming out in the fall. We believe that these reports will
also both educate consumers and encourage improvement within hospitals.
Much needs to be done to prevent infections. Some practices such as hand-
washing are highly effective and inexpensive. And when compared to the cost of
treating or managing an infected person, prevention is inexpensive. We are
confident that public reporting will move hospitals and our health care delivery
system in the right direction. We hope to eventually see the SRE and infection
reports extended beyond the hospital and ambulatory surgery center settings to
include, for example, nursing homes.

Comments pertaining to reporting of SREs and infections:
According to Chapter 305, both public reports will be available on the website of
the Quality and Cost Council (QCC). The Consumer Health Quality Council is
available to serve as a consumer focus group as the website pages with these
reports are developed. We encourage the QCC, DPH, and EOHHS to undertake
a publicity campaign, which could include, for example, web postings and radio
and television public service announcements, to ensure that consumers are
aware of the existence of the reports and how they can access and use them.

• The reports should be easy to find, with a clear link from the homepage of
the Department of Public Health, the homepage of the QCC website, and
others.
• Reports should be available in languages other than English and
understandable to individuals with varying levels of health literacy.
• Reports should clearly illustrate the number of incidents and the health
care facilities’ responses to them. We would like to see the actual reports
include not just the numbers of SREs and infections that occurred at a
given hospital in a given year but to also show trend numbers over the
years for each hospital and to provide some information on improvement
efforts that hospitals have undertaken to reduce the SRE and infection
rates.
• Information should be available to consumers via the Internet but there
should also be other methods for accessing this information, for example:
o 1-800 phone number which consumers can call to find out
information about given hospitals;
o Require hospitals and clinics to have paper copies of the reports
on-site and/or to have computers which consumers can use to view
the websites.
• Public reports should be timely and not out of date, so that the information
is most useful to consumers and most accurately represents a hospital's
current standing.
• Reports should point out hospitals that report no incidents, or very few
SREs and/or infections. We are concerned that there may be
underreporting, especially initially, and we want oversight entities to be
aware of cases in which further investigation may be needed to ensure
that hospitals are complying with the law.
• The types of reportable SREs and infections should be regularly reviewed
by a task force to determine if the list of reportable events should be
expanded and/or revised. There should be at least one consumer
representative on any task force charged with this periodic review

Comments specific to the SRE reports:
In addition to reporting on the number and types of SREs that occur at each
hospital, we believe it would be useful for the report to also show the number of
SREs for each hospital for which related care was reimbursed and the number
for which care was not reimbursed under the nonpayment policy that is also in
Chapter 305. That will give the public a better sense of how many of the SREs
were and were not preventable. Finally, we encourage DPH and the Patient Care
Assessment (PCA) Program of the Board of Registration in Medicine to continue
to play an active role in rooting out and investigating SREs.

A comment specific to the infection report:
The initial public report on healthcare-associated infections will only provide
information on three types of infections. We strongly believe that the public
deserves to have access to information about many more infections. We know
that many more infections will be confidentially reported to the Betsy Lehman
Center and internally within hospitals. Some of those infections should be
publicly reported as well. Again, this will both allow consumers to make educated
choices as to where they get their care and drive hospitals even further to reduce
those infections that are publicly reported.

Nonpayment for Serious Reportable Events
The Consumer Council believes strongly that stopping payments for care needed
as a result of a preventable SRE will help to prevent the events from happening.
Medicare and other insurers have started taking steps in this direction, and we
applaud Massachusetts for being the first state to legislate this policy across all
hospitals. As suggested in the public reporting section, we recommend that a
task force be established to periodically review the list of SREs and determine if
the list of those for which care may not be reimbursed should be expanded
beyond the NQF list. This is especially important as Medicare, for example, is no
longer paying for services related to events, such as certain infections, that are
not on the NQF list.

Patient/Family Notification: The Consumer Council is very concerned that there is
no guidance in the proposed regulations regarding how to notify patients/family of
the occurrence of an SRE as well as how to notify about payment policies. It is
left up to each hospital to put together its notification policies and procedures. If
an SRE has occurred, a patient and/or family members may be in the throes of
dealing with the physical and emotional consequences of that event. Or, it is
possible that the patient/family may not be aware that an SRE occurred. Or the
patient could be incompetent and not capable of comprehending the information.
Or English may not be the patient's first language. Obviously much care must be
taken when notification of the SRE is provided.

• In addition to informing the patient/family of the occurrence of the SRE,
they must also be notified of any known risks or future harm that could
result from the SRE.
• Notification should consist of both written and verbal communication and
given in the language of the patient/family to make sure it is understood by
those most impacted.
• We also encourage DPH to require that hospital staff be trained in the best
practices for disclosing such information to patients/family members.
• An independent third party should be present for these disclosures who
can attest to what the hospital disclosed, when and in what manner.

Non-payment: In providing information to patients/family about the decision to bill
or not bill, this must again be in the patient’s language and must be written so
that those with varying levels of health literacy can understand it. Our hope is that
as healthcare facilities become more comfortable disclosing SREs and other
adverse events, there will be improvements in patient/provider communication
over all.

We would like to see DPH play a more active role in helping to determine if an
SRE occurred and if it was preventable, in which case related care should not be
reimbursed. Under the proposed regulations, it seems that the hospitals have
most of the control over determining whether or not to charge. They may have an
appeals process that has been negotiated with the third-party payer, but we
believe DPH should have an active role as well. Further, the consumer should be
able to appeal a decision, especially, but not only, if there is not a third-party
payer or there is a high deductible to be met, and that appeal should involve
DPH.

The proposed regulations require that the hospitals submit a Root Cause
Analysis report to DPH, the payer and the patient if they do decide to charge for
care related to an SRE. However, there is no requirement to do this if they do not
decide to charge. This must be required in both cases, so that patients are fully
informed and so that hospitals learn from their mistakes. DPH should also require
that the SRE is recorded in the patient's medical record.

There needs to also be some guidance regarding the length of time for which
care related to a preventable SRE is not reimbursed. Once the patient leaves the
hospital, there may be a need for follow-up care. The patient should not have to
pay anything for that care, whether or not they go back to the same hospital, and
they should be fully informed that they do not have to pay. And a third-party
payer should not have to pay for any related follow-up care if given by the same
or an affiliated institution.

Finally, once the regulations are finalized and implemented, we believe there
should be a public information campaign to ensure that consumers are aware
that this nonpayment policy is in place and applies across Massachusetts.

Patient and Family Advisory Councils
The Consumer Council is very excited about the requirement for hospitals to
establish Patient and Family Advisory Councils (PFACs). We have seen models
for how these PFACs can be extremely effective and valued entities within an
institution. Hospitals such as Dana Farber have developed PFACs that are called
upon to bring their voices to many different aspects of the institution's work.
Every hospital in Massachusetts should establish these vehicles for bringing the
voices of patients and family members to their work.

We also strongly believe that the minimal cost associated with establishing and
maintaining PFACs is more than made up for with increased levels of patient and
family satisfaction, both in terms of having their voices heard and in terms of
actually making a difference in the quality of care provided. Patients and family
members bring unique perspectives to the work of a hospital and those
perspectives are often not heard unless there is an established mechanism to
ensure they are heard. Health Care For All and the Consumer Council are eager
to play a role in working with patient and family advisors across all
Massachusetts hospitals as the PFACs are established. We want to work to
ensure that the PFACs are effective bodies and are not established without being
nurtured by their institutions.

PFAC Membership: The proposed regulations require that at least 50% of the
membership of a PFAC be made up of patients and family members. While we
are pleased to see the requirement that a majority of the members have the
patient/family link to the hospital, we are a bit concerned that up to 50% of
membership could in theory be made up of hospital staff. We would like to see
some language specifically stating that 50% of the group cannot be staff only.
Perhaps the language could suggest a certain ratio of patients/family members to
staff (for example, 3-4 patients and family members for every one staff person) to
ensure that the group does not become too staff heavy. Further, we would like to
see language stating that there should be at least a minimum number of patients
and family members on each PFAC, to ensure that they are not too small to be
effective. According to the Institute for Family-Centered Care, an ideal minimum
number of patients and family members on a PFAC is 12-15.

We would also like to see guidelines as to the demographics of the PFAC
membership. The PFACs should reflect the diversity of both the hospitals'
patients and the community it serves. We would like to see a requirement that
individuals can access the PFAC directly without having to go through hospital
staff or administration. This would allow patients/family members with concerns
to know they can directly talk to an individual or group that shares the consumer
perspective. We would also like to see a requirement that a hospital staff person
be the coordinator for the PFAC and be the liaison between the PFAC and
hospital administration.

PFAC Activity Publicly Reported: We request a requirement for public reports
about the work of the PFACs. We know that there is a requirement for hospitals
to report to DPH annually on the work of the PFACs but very few members of the
general public seek out DPH reports. We want to ensure that the public is aware
of the existence of the PFACs and of their work. Perhaps DPH could send the
annual reports to local newspapers and/or require hospitals to post them on an
easily accessible section of their websites as well as have them available to
patients/family upon request. Further, we request that DPH issue a report on a
regular basis (perhaps every other year) summarizing the work and
accomplishments of all PFACs across Massachusetts. This would be informative
for consumers and would allow the hospitals and PFACs to learn from one
another.

Implementation: The regulations as written require that the Advisory Councils be
established by September of 2009. If this deadline is extended, then we strongly
encourage DPH to establish benchmarks that hospitals must meet by certain
dates, with the goal of eventually having a full Advisory Council set up and
running effectively by a set date. The Consumer Council and Health Care For All
would be available to participate in discussions on what those benchmarks and
their associated dates should be.

Rapid Response Methods
The Consumer Council believes that the establishment of rapid response
methods that can be activated by patients and family members will provide an
important tool to those individuals who feel that they need immediate assistance
and are not being heard. A number of members of the Consumer Council believe
that they or their family members could have utilized a rapid response method
had it been available when they were receiving care. If patients/family are well-
informed about the criteria for activating the method, we are certain that it will be
a vital tool that will save lives, as has been seen in hospitals that do have this
method in place.

Education: Our comments relate mostly to education regarding the rapid
response method. Patients and family members must be fully informed, upon
admission, of the existence of the rapid response method, criteria for activating it,
and how to activate it. This should be done in the language of the patient/family
and in the most accessible way possible across levels of health literacy. Some
examples of ways to educate them are with posters in their room and showing a
video, in addition to having hospital staff speak to them directly about the
method. Further, hospital staff need to be fully informed not only about the
method and the criteria, but about the fact that patients/family members can
activate the rapid response method and that staff should feel comfortable with
the fact that patients/family can do this. We do not want staff to see this as a
burden placed on them but rather as a potentially life-saving intervention.

Reporting: We would also like to see a reporting requirement so that the
Department of Public Health and the public, as well as the hospitals, can assess
how often the methods are used, if they were activated by patients, family or
staff, and if the activation helped to avert a potential problem. This reporting will
allow learning by everyone involved so that they can work to make these rapid
response methods as successful as possible.

Record Retention
Health Care For All would like to see language in the proposed regulations on
record retention and destruction requiring the health care facility to attempt to
contact a patient before destroying his/her records.

Thank you again for the opportunity to comment on the proposed regulations.
Health Care For All and the Consumer Health Quality Council look forward to
playing an active role in ensuring that implementation of all of these pieces of
Chapter 305 are a success. Please contact Deb Wachenheim, Health Quality
Manager at Health Care For All, at 617-275-2902 with any questions.


Ken Farbstein, President, Consumer Health Quality Council
Deb Wachenheim, Health Quality Manager, Health Care For All

Advice: Help create and shape new laws to improve patient safety.

Read earlier testimony on patient and family councils.

Motivated to advocate for quality improvement: “Quality Care Saves Lives” Event at the Massachusetts State House

This is a transcript of my introduction this morning’s event at the Massachusetts State House:

My name is Ken Farbstein and I serve as President of the Consumer Health Quality Council.

The Consumer Health Quality Council consists of a diverse group of people who have suffered, or whose family members have suffered, health care errors. So we are strongly motivated to advocate for quality improvement and patient safety. The group has been active since 2006.

Today four Council members will be sharing their stories: John McCormick from Pembroke, Jen Tosca from Kingston, Robena Reid from Acton, and Lucilia Prates, our founder and former president, from Arlington. Their video stories serve as powerful examples of those who are taking an active role in improving health care quality in Massachusetts. I would also like to acknowledge all of the Consumer Council members who are here today. Please stand up. Thank you.

The Council Members have been working with students at Boston University School for Public Health to make these video stories. We want to thank Dan Dao, Daniel Lau, Elizabeth Romero, and Nandini Ravishankar for their work.

If you are interested in learning more about the Council, please feel free to pick up information at the table or speak with me or any other member of the Consumer Council or Kuong Ly of Health Care For All.

You will hear some individual stories today, just a few of the many – too many -- stories across Massachusetts that make clear why we need to improve health care quality.

The short videos appear here.


John McCormick's Advice: You can insist on having a more senior doctor see the patient if you are unsatisfied with the resident's care.

See another video from Health Care for All.

Dear Mr. President-Elect: Patient Safety Legislation

President-Elect Barack Obama
The White House
1600 Pennsylvania Ave., NW
Washington, DC 20500-0001

Dear Mr. President-Elect,

The Consumer Health Quality Council is a unique grassroots organization. The Council consists of individual consumers who have experienced poor quality care, either directly or through loved ones, and who are motivated by their experiences to advocate for better quality care for all residents of Massachusetts.

The Council would like to advocate for certain provisions that we strongly hope to see in the new administration’s healthcare agenda. These provisions became state law in Massachusetts after we advocated for healthcare quality improvement legislation during the most recent session of the Massachusetts legislature. We chose the following areas of focus based on our experiences: reducing the rates of healthcare-associated infections and other serious preventable errors, promoting consumer empowerment, and improving patient and provider partnerships and communication. The following provisions are now law in Massachusetts:

1. Hospitals will no longer be reimbursed for care associated with serious preventable errors;
2. Hospitals are required to establish rapid response methods to allow for immediate assistance if a patient is deteriorating;
3. Hospitals must set up patient and family advisory councils; and
4. The Department of Public Health will publicly report hospital-specific rates of healthcare-associated infections and serious reportable events.

We are hopeful that quality improvement and cost containment and others will not only improve care for all residents of Massachusetts but will help to make healthcare reform a success. You can read the specific language for these provisions in the corresponding Sections 51H, 53E, and 53F of Chapter 305 of the Massachusetts General Laws here.

We urge you to emphasize the importance of access to high-quality healthcare for all Americans. Attached to this letter are several stories we have written on how medical errors have affected us, our families and caregivers, and our communities. These stories communicate the very real threat of errors happening in anyone regardless of income level, race, or educational level. We share these stories in the hope that they lead to changes in the healthcare system so that what happened to us will not happen to someone else.

Please let us know if we can provide any assistance. If you have any questions or would like any information from us, please contact Deborah Wachenheim, Health Quality Manager at Health Care For All (617-275-2902), or Ken Farbstein, President of the Consumer Health Quality Council (781-444-5525).

It helped to save his life: Universal health insurance in Massachusetts

Tim [not his real name] was not feeling well, but didn’t see a doctor because he had no health insurance. He was uninsured for several years before he contacted Health Care for All’s HelpLine. The counselor helped him apply for benefits over the phone. Tim says, “Without Commonwealth Care, it would be nearly impossible to find an affordable health insurance plan.” Since becoming insured and seeing a doctor, Tim was diagnosed with diabetes and is being treated. It’s clear to him that getting insurance through Commonwealth Care and finally visiting a doctor helped to save his life.

The flip side of Tim's story from the files of Health Care for All is seen in a story from my aunt's life. The timely diagnosis and treatment of diabetes may well have given extra years of active life to my aunt, Anne Troutman, as well. A very high-energy woman into her 70s, she loved to travel. She didn’t treat the poor circulation in her feet, and required an amputation of her big toe late in life. That greatly reduced her ability to get around, and her quality of life. We don’t know how much she knew about her diabetes and self-care, for she died, not long afterward, of a heart attack. Clearly, a doctor could have helped her, as Tim’s doctor is helping him.

Advice: Ask your friends if they have health insurance, and refer them to the HelpLine at 800-272-4232 if not. The HelpLine answers questions about healthcare in Massachusetts, including co-payments, health insurance rules, directions, program eligibility, and much more.

Read another story about care for the uninsured.

Thanks to Amy Franz for the source story in the Fall 2008 newsletter of Health Care for All.

Each of us has had a serious error: Testimony on patient councils for hospitals

Here is the testimony to the Massachusetts Executive Office of Health and Human Services that I delivered this afternoon on the health care law that Gov. Deval Patrick signed on August 15:

Dr. Bigby, Mr. Wilkinson, and Commissioners,

It's very late in the day, and I appreciate your patience in hearing our testimony on Chapter 305.

I'm a member of Health Care for All's Consumer Council. Each of us has had a serious error in our family.

We're very happy with the quality sections of the newly signed law, Chapter 305, and urge you to request a lot of money in your departmental budget for the next fiscal year for monitoring hospitals' reporting of serious events and hospital infections, and encouraging rapid response teams in hospitals.

In the interest of time, I'll focus on hospital patient and family advisory councils. Elsewhere in the country, these councils have greatly raised patients' satisfaction levels. And, since patients are trained on how to care for themselves, fewer need rehospitalization, and fewer come back to the E.R., after leaving the hospital. So there can be big cost savings, too, IF people receive solid training on how to be effective council members. At a few thousand dollars to train a team at each of the 70 hospitals in the state, that comes to a few hundred thousand dollars. That money would be well spent.

Thanks for your consideration.

Advice: Look for opportunities to create and influence laws for patient partnership.

Read another story about testimony on Massachusetts legislation.

Lisa's Story: A video on Reflex Sympathetic Dystrophy misdiagnosis

This short video was prepared for Health Care for All:



Advice: For a questionable diagnosis, ensure that the second opinion you get is truly independent of the first doctor's opinion.

Please share this video with your friends.

Ginny's Video: Staph infection from a broken ankle

She's walking again, 28 surgeries later. See Ginny's short video.



Ginny is a member of the Consumer Health Quality Council of Health Care for All. She told her story of a broken ankle, the staph infection, leg amputation, brain aneurysm and her recovery to the filmmakers Madhavi Bezwada, Meredith Mueller, and Hsiang-Yin Yeh of the Boston University of Public Health.

Advice: Please share her story widely.

Linda's Mother: A video on fatal medical errors

Three graduate students at Boston University School of Public Health made this short video as part of the Storybank Project of the Consumer Health Quality Council of Health Care for All:

Health Care for All organized a program at the Massachusetts Statehouse today, which publicly aired this video and two others for the first time. Legislation that is now pending in the Massachusetts Legislature would reduce medical errors by requiring hospitals to report certain infection rates, involve patients more formally in hospital councils, encourage doctors and nurses to apologize for errors, and make a number of other positive changes.

Advice: Share this with your friends and legislators.

I don't think I can work with you if you're going to be so demanding: A medication error story

This story is from a member of the Consumer Health Quality Council of Health Care for All:

I've told versions of this story in so many sterile white rooms. When I was 14, I suffered from a series of unexplained seizures, and ever since then, debilitating migraine headaches. It is said that the function of the human brain is one of medicine’s last remaining mysteries. I believe that the function (or should I say dysfunction?) of our health care system is equally confounding. When I first moved to Boston after college, my seizures and headaches were well- controlled.

Soon after I started my first job, I was stricken by an intractable migraine. I was newly endowed with health insurance, so I picked a doctor’s name out of a directory. I was 22, and it seemed as good a method as any for choosing a PCP. My doctor asked me briskly why I'd come, and I explained about the relentless headache and my complex neurological history. I requested a referral to a neurologist. "I don't think you need to see a neurologist,” she said dismissively. “I want you to try taking Sudafed--" she scribbled the dosage on a pad-- "and see if that helps.” I knew my condition—and my suffering--was far beyond the powers of Sudafed, and I tried to convey that. But the doctor smiled tightly, gathered up her papers, and left the room. When the Sudafed failed, my PCP informed me that no in-network neurologist could see me before March, which, after all, “was only two months away”.

After days of diligent effort, and calls to three different hospitals, I finally wrangled an earlier appointment. By then I was enraged. The pain had become excruciating, and so had the indignity of having to negotiate the privilege of medical care. I recounted the whole saga to the neurologist. He nodded thoughtfully, stroking his beard and taking notes. I hoped he was jotting down ideas for fast- tracking my future appointments. Finally, he asked how I was feeling. I sighed, trembling now. "I feel horrible. I'm really hoping you can give me something for the pain." The physician paused and then his face closed. "I don't think I can work with you if you're going to be so demanding. I'm going to refer you to another neurologist; hopefully he can accommodate you better." I nodded politely, deeply humiliated. I thought about the rain outside, the missed morning of work, all the effort wasted for this referral, for which I'd lobbied so hard. I believe that it was only through family connections that I gained access to a headache specialist who ended my misery and prescribed medication that has helped me for years.

But sadly, the story doesn’t end there. After several years of equilibrium, the intensive stress of graduate school wreaked further havoc on my system. I met with yet another provider, who prescribed a medication that I knew lowers seizure threshold. In fact, I said, I had taken the same medication as a teenager, right before I experienced my first seizure. The doctor was cavalier. “Those seizures were almost 20 years ago; I think you’ll be fine.” Without consulting any member of my health care team or reviewing my medical records, he wrote me a prescription. Then he left for vacation.

Exactly two weeks later, a grand mal seizure rendered me unconscious. I fell down on the sidewalk and woke up in an ambulance. Completely disoriented, I barely knew where—or who—I was. I spent the night in the hospital, and then began the process anew. Finding specialists. Begging for appointments. Demanding coverage from the stingy grad school health insurance. Eventually stabilizing the situation with different medications (expensive drugs that I will have to take for the foreseeable future) and caring providers.

I remain stunned that I received such uneven care in a city renowned for its medical resources. I’ve learned that the best providers are the most difficult to access, and that our flawed and complicated health care system often undermines the best intentions of health care and insurance providers. Through my experiences, I’ve learned to advocate for myself and my health. Through the Health Care Quality Consumer Council, I hope to advocate for systemic change.

Advice to patients: Become an advocate, and get an advocate.

Read another wrong drug story. Subscribe to the source Health Care for All newsletter here.