The View From Below

The public comment of Regina Holliday on 

“A Prototype Consumer Reporting System For Patient Safety Events”
(I have placed the slide image below in many of my speeches since September to encourage people to follow your work on this.)

Dear AHRQ Desk Officer and Doris Lefkowitz,

I have spoken at length these past four years since the death of my husband Frederick Allen Holliday II about the need for the patient/family caregiver to have real time access to the electronic medical record and the need for a national abuse telephone number/website for the reporting of harm.  We desperately need this because there are always two sides to every story.   As today is Sunday and the last day to report comment I will tell you this story.

As a child I would sit beside my mother in Church and draw. I know it is important to pay attention in Church, but I thought God would not mind if I drew pictures from the Bible.  Eight years ago my son Freddie began drawing in Church. During one service, I looked down to see a peculiar picture on his drawing pad. The picture consisted of a series of small houses lined up along the bottom of the paper. Above the houses stood stick people and fish in the sky. Along the very top of the page was an elongated oval. I was stumped trying to figure out the meaning of this image. In my best Church whisper I asked, “What are you drawing?”

He looked at me as though I was being particularly dull and said, “Noah’s Ark…from below.”

I have seen many versions of Noah’s Ark in my life; but for the most part each picture contains a boat, animals, sunny blue sky and a rainbow. I never saw a picture of what lies beneath until Freddie’s drawing. I guess it is just a matter of perspective. Both images are equally valid and each focuses on a different part of the story.

Healthcare up to this point has been very blue sky focused.  I commend you for your attempt to help us show the view from below.

I thank you for your request for comment on a Prototype Consumer Reporting System for Patient Safety Events.  It is nice to be asked our opinion on such a important topic.  I read your proposal.  The language is a little hard to follow but to sum up:

The Agency for Healthcare Research and Quality (AHRQ) to request that the Office of Management and Budget (OMB) ask for approval of an information collection project: “A Prototype Consumer Reporting System For Patient Safety Events.”

Patient Advocates heard about this first in September of 2012 and had 60 days to comment, most of us missed this window, as it was not well publicized.  AHRQ did get 45 comments and 65 personal stories in those 60 days.   The project hopes to design and test a system that collects reports of harm using standard definitions and forms.  Local providers can then use this data “to create or enhance their own local reporting systems.”

Now that clause bothers me a bit because a lot of us have already been reporting harm to our local providers and either getting no response or getting the response that our harmed loved ones were treated “within the standard of care.”

You mention that most healthcare systems do not ask for nor promote patient reporting of harm.  I would respond it has been rarely in their financial or workflow interest to do so.  You mention AHRQ is aware of the important and unique perspective of the patient/family caregiver.  I would hazard to say that you recognize it because you are looking at the entire web of care throughout the US.  You see the value in data aggregation from a wide variety of sources.

So it is the best interest of this study to consider large regional or national harm reporting.  We have suffered through the voluntary local provider method for far too long. 

(According to your letter, this research has the following goals)

1. To develop and design a prototype system to collect information about patient safety events.

Great! Let us know how we can help!

2. To develop and test web and telephone modes of a prototype questionnaire.

I would highly recommend you look at what Traitwise.com is doing in the survey world to see a system that has ease of use foremost in mind.  Also please get some folks that are well versed in plain language to look at your word choice.  The problem of being so well staffed with academics and researchers is that your word choice often reflects your worldview.

Also pictures and visualizations can be very helpful in creating greater understanding of the event intake form online.

3. To develop and test protocols for a follow-up survey of health care providers.

This demonstration project is being conducted by AHRQ through its contractor, RAND Corporation, with Brigham and Women's Hospital, Dana Farber Cancer Institute, and ECRI Institute…

Now, I am a mite concerned about the part where you talk about checking a patient report of harm against provider’s incident log. I personally saw a great many incidents of harm that occurred to my late husband while hospitalized but were not reflected in his medical record.  In some cases this was omission in some cases blatant falsifications were recorded.  Are you using the medical record to substantiate reporting of incidents?  If so are you enquiring whether the patient and family caregiver were able to read the record in a real time fashion and able to amend errors in the record?

Those are my most pressing concerns right now.  Please do reach out to us in the world of patient advocacy to help in the next phase of this project. 

I must confess when I think of your organization in my mind I do not see AHRQ but an Ark.  I see a promise to gather data in a kind of binary 2 by 2.  I see a willingness to spread the knowledge that comes from that data.  

Thank you for reaching out to all of us known as “the harmed.“  We will willingly share our saddest moments, our deepest hurt if by doing so you can promise it will never happen again.  

We want to join you in building a rainbow, a spectrum of the many views in health care.

Regina Holliday,

Patient Activist and Artist, Founder of The Walking Gallery in Healthcare

"Independence Day"

My children often laugh at my rather empty cache on iTunes. For a very long time I had downloaded only one song and that was Martina McBride’s “Independence Day.” If you need a refresher on that song you can hear it here and the refrain is written below:

“Let freedom ring, let the white dove sing

Let the whole world know that today

Is a day of reckoning.

Let the weak be strong, let the right be wrong

Roll the stone away, let the guilty pay

It's Independence Day.”

Last 4^th of July, I listened to that song in continuous rotation all day as I painted Julia Hallisy’s jacket: “Independence Day.”

Julia Hallisy is one of the stalwart defenders of patient safety in this nation.  Today I want people to realize how much she and her family has been hurt by the current care system.

Julia’s Father’s Death:

Julia’s journey into healthcare harm began with her father Tony Bajone (legal name was Julius George Bajone) in 1988.  Kidney stones were bothering him and went to the VA in San Francisco for treatment.  It was determined that he needed surgery and pre-op studies were done, including a chest x-ray. Since he was a smoker, Julia asked his doctor if the chest film looked ok and was told the results were fine.

Nine months later Tony started coughing up blood.

A first year resident told the family that it was shame that they hadn't followed up with the chest film results. Julia was stunned and asked what the film had shown.  The results had shown a large mass in his lung. The radiologist had written a report saying follow up would be needed immediately.  Tony’s lung cancer that had gone untreated and at this point was terminal. Julia requested Tony’s medical records and the radiology report was not included. The VA said it was "missing" or didn't even exist. Julia went to the medical records department and told the staff that it did indeed exist.

They miraculously found it.

Julia’s Sister’s Death:

Donna Bajone, Julia’s sister, was born with a congenital heart condition that required surgery as a child. At the age of 25 she developed an irregular heartbeat. Donna went to Stanford University where she had been receiving care since she was 2 years old.  She had no health insurance.  Donna was too old in 1992 to be on her parents plan. (This lack of access has been addressed in the Affordable Care Act or what some folks call Obamacare) The bank she was working in kept her work schedule just below the number of hours to get insurance.  Stanford did place a pacemaker in Donna on an emergency basis, even without the insurance. They released her in a few days and the facility requested she get on welfare if she wished to receive any additional care. Donna continued to experience an irregular heartbeat and several calls to Stanford did not help. They would not see her until the insurance or Medi-Cal coverage was available. 

She died in her sleep less than a week later.  Julia and her family tried to get access to Donna’s medical records after her death and they did not receive them for months.

Julia’s Daughter’s Life and Death:

Kate Hallisy died of Cancer at 10 years of age.

In 1989 five-month old Kate was diagnosed with bi-lateral retinoblastoma, which means she had malignant tumors in both eyes.  This is usually a very treatable form of cancer, but things did not go well for little Kate.  At 18 months Kate underwent surgery to remove her right eye.  She had her right leg amputated in 1997 due to bone metastasis.   In her last months the cancer spread into her brain.  All throughout the family’s 10-year struggle they fought for appropriate care often finding themselves at odds with their insurer.  In addition to being the caregiver of a very sick child, Julia would become the communication channel between the doctors and insurance; all while maintaining her dentistry practice.  As the cancer spread they would have to fight for appropriate drugs to maintain a quality of life as Kate’s small body filled with cancer. 

They even had to fight for access to an oxygen machine in Kate’s last months.

Julia wrote a book detailing her struggle to provide care for her daughter and to help others in their fight entitled The EmpoweredPatient.

For this is a fight.

There are folks who wish to join The Walking Gallery and hope to get a “pretty jacket.”  Julia has this one.  It is filled with beauty and pain.  She has the weight of her family on her back.

I listened to “Independence Day” while I painted this because the pain she suffered is the same kind of terror as living for years in a home filled with abuse.  Trust me, I know, I have suffered through both and they feel much the same. 

Today is that day of reckoning.

This painting and my mural 73 Cents both contain the same quote from the Declaration of Independence:  “Experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to arm themselves by abolishing the forms to which they are accustomed.”

I ask all who read this blog to write in your public comments supporting a need for 

A Prototype Consumer Reporting System for Patient Safety Events here.

We need a safe way to report harm and abuse in they system.  Please comment before July 8^th.

Do it for me. Do it in the memory of Fred Holliday II. Do it for three generations of Julia’s family who did not get to celebrate this Independence Day.

A, B, C, D or F Leapfrog and the Hospital Safety Score

Three years and eight months ago I sat at a computer trying to compare facilities in the greater metropolitan area while my husband Fred was hospitalized in Maryland with stage 4-kidney cancer.  I could find very little information then.  I knew very little about how to compare facilities or search the internet.  But I quickly learned about the concept of a “pay wall.”  As a family whose primary income was in jeopardy due to a late stage cancer diagnosis, a pay wall was determent enough to shut down my search capacity.

A year later in the spring of 2010 Ted Eytan, MD showed me a link to a health data visualization competition that promoted by Sunlight Labs entitled “Design for America.”  Designers, programmers, medical professionals and artists were asked to create visualizations of health data that compared communities and depicted hospital quality using open and free government data sets.

I painted Apples to Apples.

But before I could begin painting, I had to understand the data sets.  Ted was a doctor so he was able to quickly find data sets I would need and help me understand them.  As I dug deeper and deeper into the data, I would see an acronym HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) and would need to google that.   I would also grow so frustrated to see scores presented as percentages.  Many facilities seemed perfectly happy with a score of 55% on a given indicator.  Now, I only have a high school degree, but I know full well that 55% is an F.  I thought it should be presented that way.

My research continued and in the fall of 2010, Ted and I would attend a CMIO (Chief Medical Information Officer) bootcamp for Medstar.  I was asked to speak and present the patient view of CPOE (Computerized Physician Order Entry) and CDS (Clinical Decision Support.)  I began to research these terms and discovered there wasn’t a patient view of CPOE or CDS.  The closest thing I could find was from an organization named The Leapfrog Group.  They were testing systems to make sure EMR (Electronic Medical Record) systems did not cause patient harm. 

This summer, to my delight, the idea of a report card for hospital quality combined with prior research.  Leapfrog debuted its Hospital Safety Score in June.  The score uses measures of the Leapfrog Hospital Survey, AHRQ, CDC and CMS to present a single overall score rating patient safety.  They also use additional data from AHA annual survey to allow for as much credit as possible toward the hospital safety score.  Which is really nice in view of the letter that AHA president RichardUmbdenstock wrote in June attacking the methodology Leapfrog was using.  Leah Binder president of Leapfrog wrote a response letter that explained the methodology and clarified each point.

Today Leapfrog launched the Iphone/Ipad and Android app for Hospital Safety Score.  They also released information from hospitals that were not ranked in June.  There were some surprises to be seen and now a few D’s and F’s.   There are several rating systems in the market, but Leapfrog is free to the public and is designed for ease of patient use so each family can find the safest hospital in their community.

Key Findings from Leapfrog:

“· Of the 2619 general hospitals issued a Hospital Safety Score, 790 earned an “A,” 678 earned a “B,” 1004 earned a “C,” 122 earned a “D” and 25 earned an “F.”

· 58 percent of hospitals maintained the same grade level as they had in the scores issued in June.   Another 34 percent of hospitals changed by one grade level (some higher, some lower). About 8% of hospitals showed more dramatic change, moving two grade levels or more up or down.

· A wide range of hospitals earned “A’s,” with no one class of hospitals (i.e., teaching hospitals, public hospitals, etc.) dominating among those showing the highest safety scores. Hospitals earning an “A” include academic medical centers New York Presbyterian Hospital, Brigham and Women’s Hospital, and Mayo Clinic. Many rural hospitals earned an “A,” including Geisinger Medical Center and Blessing Hospital.  

· Hospitals with myriad national accolades, such as Massachusetts General Hospital, Duke University Hospital, and Cleveland Clinic Florida each earned an “A.”  

· “A” scores were also earned by hospitals serving highly vulnerable, impoverished, and/or health- challenged populations, such as Bellevue Hospital Center and Detroit Receiving Hospital.  

In analyzing statewide performance, both Massachusetts and Maine showed outstanding hospital safety results. With 83 percent of Massachusetts hospitals and 80 percent of hospitals in Maine awarded “A’s,” it’s clear these states have each put a priority on safety in hospital care.”

In addition to providing this amazing tool for comparison, Leapfrog recommends people report medical errors by contacting ProPublica, an independent journalism organization that is investigating patient safety problems. ProPublica has set up an interactive web survey and special hotline for this purpose at www.propublica.org/patientharmsurvey or (917) 512-0241.   

I find this especially reassuring as we head toward a path nationwide accounting of errors.  In the fall many in the patient safety community were made aware of a White House initiative to create a National Consumer ReportingSystem for Patient Safety designed by AHRQ, the Rand Corporation and ECRI Institute in May of 2013.  So many organizations and people are working together to reduce patient harm.

This is a great day for patients.  This a great day for an artist who once toiled for hours trying to decipher reams of data in order to create one hospital “report card.”

But it is not such a great day for the residents of the state of Maryland.  That state along with districts Puerto Rico and Guam do not report data to CMS on Patient Safety. So if you are trying to compare Maryland hospitals you are out of luck.

Three years and eight months ago I sat at a computer trying to compare hospital facilities while my husband Fred was hospitalized in Maryland with stage 4-kidney cancer.  I could find very little information then and I was shut down by pay walls.  Now I know a great deal about facilities, how to research and Hospital Safety Score is a free service.   If I want to pick a hospital with an “A” rating on the border of DC and Maryland, I guess I would go to Sibley, because I know the score.  I hope hospitals in Maryland think about that and consider voluntary reporting to Leapfrog.

As ePatient Dave DeBronkart would say,  “Maryland, Give Us our Damned Data.”

Dear patient advocates, e-patients and caregivers,

 

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

 

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

 

 

Background:

 

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

 

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

 

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

 

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

 

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

 

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

 

PWP Notes: (I’ve taken some liberty with order to organize it better)

 

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

 

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

 

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

 

 

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

data access

Demand access to your data by USB, CD or download, etc?

dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We love forward to hearing from you! Please post your ideas in the comment section below!

-Pat Mastors and Regina Holliday