Johns Hopkins Part 3: Getting the Electronic Health Record (EHR) Right

Today I received a call from Stephanie L. Reel, Vice Provost for Information Technology and Chief Information Officer, The Johns Hopkins University. We discussed the importance of having an EHR system that worked for health care providers and patients. I suggested that she talk to some end users to see what actually works and does not work.

My experiences demonstrated how the EHR system can become a burden for all levels of health care providers and patients. This becomes exacerbated when the productivity of health care providers is measured and calibrated by the inputs and metrics that are captured as part of the EHR. It seems that with all the numbers that are crunched the qualitative aspect of health care interactions are lost. Moreover, the value of the interpersonal dimension of care is diminished if not obliterated by just counting the procedures that are quantitative, i.e., easy to measure. As a result a health care provider ends up spending more time in front of a computer than in front of a patient. This is not what was intended.

All health care providers and patients want an EHR that works. Health care providers need to have an EHR system that helps them input, review, and correct patient information accurately and easily. Patients want information that is accurate so that the precious time with their health care provider is not spent making corrections.

In our case my husband has an excellent physician and I want to make sure that the tools that are at his disposal are useful tools and not impediments. I also want to make certain that during those visits that by their very nature are stressful, that time does not have to be wasted because the EHR failed to do what it was intended to— be a vital tool for patient safety by reducing the likelihood of medical errors.

Johns Hopkins Part 2: Is This Service Excellence?

The initial response to my email (see earlier post) was from a staff person who was supposed to respond to patient issues. I thanked her for her call and emphasized that it would be better if I received a call from a more senior person who could address my concerns with their EHR system and the ease of its use.

Later I received a call from Ms. Becky Zuccarelli, Director of Service Excellence, who informed me that because of HIPPA requirements that she would need a release before she could talk to me about the patient issue. I informed her that this was not a HIPPA issue as it was not about a specific patient but about their system. While she tried to do what she was trained to do, she was unable to understand the broader implications of the failure of their EHR system to either engage physicians or other health care providers or be responsive to the needs of patients. Ms. Zuccarelli's focus on service excellence missed concerns about system adequacy.

Part of the success of any new system is listening to feedback from users and fixing the problem. Handling a situation is not the answer. I emphasized that they need to fix their EHR system before they kill someone and the fatal mistake ends up being chalked up to medical error rather than avoidable system failure.

I am still hoping for a meaningful response and will keep you posted on what happens next.

Johns Hopkins Part 1: The Electronic Health Record (EHR) that Isn't

On Friday, September 16, 2011 I sent the email below to Dr. Edward Miller, Dean and CEO of Johns Hopkins Medicine. Let's see the response I get:

Just to share with you two exchanges I had with your staff which indicates a failure in the design and implementation of your EHR system.

1. When I brought my husband in for his regular visit, once again he noted that he did not take the medicines listed on the printout. The response was that it was too complicated to change what was there as it would take too much time and anyway his medicines were properly listed in the notes.

2. When I reviewed the letter for my husbands scheduled infusion his medicine was incorrectly listed as Rituzan. When I called to get it corrected I was told that it was a mistake in the coding but that he would get the correct medicine..and moreover it has been incorrectly listed in the system since March when he first started to get his infusions.

Having worked on many aspects of getting legislation passed with respect to EHRs I was surprised and disappointed by the responses I received. EHRs are for more than billing; they are essential for patient safety. If someone is brought into the ER do you think the staff in the ER have the time to read through the notes to know the medications that a patient has taken? The responses of your staff reflect the failure of your EHR system to meet the needs of the health care providers at the front line as well as those of the patient.

I hope that you are able to make your system work better before someone gets hurt. I look forward to hearing from you about how you intend to fix a system which is not working as it should.

Sincerely,

Jane L. Delgado, Ph.D., M.S.
President and CEO
National Alliance for Hispanic Health
1501 Sixteenth Street, NW, Washington, DC 20036-1401
(202) 797-4321 Executive Office | (202) 265-8027 FAX
jdelgado@hispanichealth.org | http://www.hispanichealth.org

Public Health and Science

There is an enormous gap between the public health community and the science community. Public health is driven by large data sets and averages. Science is moving into the realm of each person being their own universe of 10 trillion cells and 100 trillion microbes. How do we use the rich data we are able to analyze about the individual with health at the community level? We need to benefit from both.

Public health must become better at measuring multiple factors at the same time while understanding that communities are more than the composite of unique individuals factors. Our analysis of communities and public health needs to keep up with what science is teaching us about individualized health and systems.

For Cinco de Mayo No More Latino Policy Day

When I was invited to a recent gathering for a Latino Health Policy Day I thought I was reading some script from the 1980’s that read, “In order to reach the Hispanic community invite a group of Hispanics to meet with you one day.” Are we so out of touch with each other that we need Latino Day to hear from Hispanics? I wondered if there was an Anglo Day, and only on that day would the effort be made to include Anglos in policy.

In health to make good policy we need to understand the entire community we serve, and it needs to be a part of how we do our work every day. Today about 1 out of every 6 persons in the United States is Hispanic. Also consider that the combined total population of Canada and Australia is 57 million which is about the size of the population of Hispanics in the U.S (54 million*).

Just not on Cinco de Mayo, but everyday our policies need to take everyone into account and make it possible to tailor what we do to meet individual needs. To have good policy it means that every day is Hispanic Policy day, African American Policy Day, Anglo Policy Day, Women’s Policy Day, and so on. If we do not include all communities we make policies that are bound to miss the mark.

*Unlike Census and others when I give the population of Hispanic persons in the United States I include the 4 million citizens who live in Puerto Rico.

New data has surprising results

Today the news is that salt is okay and yesterday it was that BMI was not a good measure of health. The eagerness to make news sometimes gets in the way of being informative. One day’s science news is trumped (does that have new meaning today?) by the next day’s new discovery. Typically the data are described, the findings are made into pronouncements, and the need for further research is discussed. The reader is left wondering which facts were correct. Is it any surprise that consumers are confused by and distrusting of science? When information is presented in a way that is unclear people just keep doing what they are most familiar with and ignore the information generated by the new finding. We need to make science relevant to the people we are trying to reach.

Discussions we need to have

On July 23, 2010 Senator Webb wrote an Op Ed Piece for the Wall Street Journal, "Diversity and the Myth of White Privilege" that inspired me to write a Letter to the Editor. I was pleased that it was published today (July 28, 2010) as it provided a different framework for understanding why so many of us do the work that we do.

Senator Webb seems fixated only on slivers of history of his home state of Virginia and not the realities of the nation. He ignores that Spanish settlers were on the continent before Jamestown or Plymouth Rock were settled. But the issue goes beyond who was here first.

What is most damaging about his commentary is that it suggests that the only reason we should help African Americans is because of past injustices; and, that no other community has suffered. There are thousands of incidents from the past and the present that depict a different reality. In health those realities get played out in how patients get information, the decisions we make about treatment, and so much more.

We need to understand our beliefs about others if we are going to get past them and provide quality care to all. To save health care resources you need to provide a patient with the care that is needed and not one which is based on false assumptions.

Field Research 101

It is Valentines’s Day, Chinese New Year, and the beginning of a new decade so there is much to celebrate. Last year was more difficult as those I love spent too much time in hospitals. As I was with them it was an opportunity to watch up close and experience the many facets of our health care system. I found that I had to find the place in myself where I could be calm when all I wanted to do was scream, “Do you hear what the patient is saying?”
It became very clear that the clinical nuances of the individual patient seem to get lost when health care providers focus on their clinical guidelines and not on the specifics of the person in front of them. I watched as very caring and smart providers were rushed and wanted to take the path that was most familiar to them.
Fortunately, on my IPhone I have Epocrates™ and I used it to show how the patient may have a negative response to the medicine they were going to give him. I made the health care provider take extra time and double check. They took the time and checked their system and the medicine was not given.
What would have happened if I had not been there? “Medical Error” may have had another person to claim. Our systems can be brilliant but they can also blunder. The difference between one and the other is usually the act of one human being.
We need health insurance reform for certain. We also need to change the way our health system functions. That would be something we could all celebrate.

The Need for Plain English and Page Limits

Since we are hitting the reset button on health insurance reform, Congress should also commit to voting out a bill of reasonable length and in straight forward language. After all the U.S. Constitution is an eloquent 4,400 words. Surely Congress can commit to writing a health insurance reform bill that is of a length and language that would allow all Americans to understand the bill. The new process should be that at the outset all legislation had to be written in plain English and with a page limit for the document. A maximum length of 50 pages would be read by most. I have been informed by those whom I trust that laws are necessarily long because they have to cite all the other laws that are being changed. My response to that necessity is to add those as footnotes. Having a long document means that it is only read by a limited set of people (i.e. lobbyists). Of greater concern is that the longer the document the more it becomes burdened by special inclusions and carve outs.

The legislation on health insurance reform should be something that we all can read and understand. It should be concise and understandable by those folks who are most clearly impacted by it; that means most of us. To have real insurance reform can be simply put: we all must have it, exclusions or rates based on pre-existing conditions, gender, or age will no longer be allowed, and because we are a responsible society there will be programs to make sure that persons of modest means can buy into a plan. With that said, that leaves 49+ pages for more details.

Better outcomes for patients ignored

I posted this to the National Journal Healthcare blog this morning:

I waited to write this blog because I was hopeful that someone would comment on the July 2, 2009 New England Journal of Medicine article, “The Effect of Medicare Part D on Drug and Medical Spending.” What Zhang, Donohue, Lave, O’Donnell, and Newhouse reported was that “Groups that had no or minimal drug coverage before the implementation of Part D had reductions in other medical spending that approximately offset the increased spending on drugs, but medical spending increased in the group that had more generous previous coverage.”

These findings bring to the forefront the reality of our health care system - just because you do the right thing for a person’s best health does not mean that it will reduce cost or have the same effect for everyone. We can all agree that it is better to take medicine than to have “other medical spending” because it means that you are able to manage your disease. This was the outcome for those who had the least coverage before Medicare Part D. For those who had more coverage the findings are harder to interpret.

In the same way that Medicare Part D was the right choice for patient health, expanding health insurance coverage to all, including preventive care coverage, is the right thing to do now. But we must be honest. Just because it is the right thing to do does not mean it will save money.

The key point is that health care is complex and deserves more than sound bites especially because it is about life, death, and the difficultly in measuring the quality of life.

Health Care Costs: More than Dollars

I posted this to the National Journal Healthcare blog this afternoon:

Today’s New York Times article ”In Health Reform, a Cancer Offers an Acid Test” is the type of analysis and discussion that makes me shudder when I think of how easy it is to misuse the findings from proposed comparative effectiveness research when the focus is just cost. The Times has a chart comparing the average cost of the five types of treatment for prostate cancer. What is lacking is how each procedure impacts the life of the person receiving the treatment.

I propose that all those considering health care reform remember to take the perspective of the patient and health consumer. For each procedure what needs to be included as part of any cost or effective analysis there is also a new measure that takes into account consumer’s assessment of PAID (pain, absence from work, invasiveness of procedure, and disability.) for each procedure under consideration. Patients need more information but it is more than just cost of the procedure.

Reading between the lines

There has been much hubbub about the New Yorker article comparing El Paso to McAllen and virtually nothing about Richard Cooper’s article, ”States With More Health Care Spending Have Better Quality Health Care: Lessons About Medicare.” (December 4, 2008 Health Affairs – Web Exclusive). It is easy to understand why.

The New Yorker analysis resonates to the mythology that pervades thinking about health - that there is great variability in costs of health care because in some areas physicians are not doing what is good treatment but rather taking actions that will only increase their income. The suggestion is made that where there are high Medicare costs it is because there is much waste and the suggestion is stretched to explain all the waste in health care.

Cooper’s analysis however looks at all health spending instead of the slice represented by Medicare data. Cooper finds that, “Medicare spending per enrollee correlates poorly with total health care spending per capita.” He takes it one step further with the data he presents to state that regional variation in Medicare is not a valid measure of how well the health care system is working.

My question is simple - then why do we keep using Medicare data the way we do?

Best Outcomes for All

I just finished the first edits on my book (look for it in early 2010) and am so glad that I will be able to write my blog again. The best part about writing a new book is that it is an opportunity to look across sectors and see what is on the horizon that will shape our health and well being. In many ways the new developments left me hopeful. At the same time it became clear that it was time to rethink some of the terms used by the health cognoscenti.

Let’s begin with discarding the conceptual framework of ED (not the one of blue pill fame) but as in “Elimination of Disparities” a term which over the past decade has had increased popularity. Too often ED became the new code for addressing the health care needs and concerns of Hispanics, African Americans, Asian Americans, Native Americans, and other communities.

The research that ensued documented the differences in care and treatment. With ED too many made the assumption that the best treatment would be the same for all. I knew that was a mistake because too often the goal of equal treatment did not sufficiently focus on outcomes.

There are differences among individuals and the best health care for a non-Hispanic woman in Minnesota may not be what is best for a Latina in Santa Fe. If fact, there is a growing body of evidence that the Latina is less likely to practice unhealthy behaviors like smoking and is likely to live longer that the woman in Minnesota.

As we enter one of the most robust debates we have had on health care, the need should not be to standardize treatment but to design systems that achieve the best outcome for all (BOA). The goal should be “Best Outcomes for All”; not on the average but at the individual level. That is something we can all get behind.

Saving money is not always good news

It will be refreshing when I go to a meeting and people present data in a way that tells the full story. Take the recent thrown around fact that we have spent less money on Medicare Part D than had been projected. Isn’t it great that we saved billions of dollars? The reality is that half of the savings come from the failure to enroll all of the modest income persons who are eligible for extra help in paying for their medicines. While the savings may sound good, the challenge remains to enroll all those eligible in a program that helps them get the medicines they need.

Hispanics Have Highest End-of-Life Costs

A study published this week in the Archives of Internal Medicine found that in the last six months of life cost for care for Hispanic patients ($31,702) was 60% higher than for non-Hispanic white ($20,166) patients. I have been there at the end-of-life for four people who were very close to me. If the costs are higher for Hispanics than for non-Hispanics whites I would say it is because no one took the time to talk to the patient and the patient’s family.

Hispanics are the group least likely to have a regular source of care. This means we are also less likely to have a relationship with a provider who understands our wishes on end-of-life issues. Ensuring the dignity and comfort all people deserve at the end-of-life is one more reason why health reform is so important. Hispanics must have access to health care providers who can understand their patient’s language and cultural values and can support families in their decisions about end-of-life care. It’s a simple matter of quality of care.

Five Popular Health Care Myths in 2009

In my latest post to the National Journal Healthcare Blog, I identify five popular health care myths in 2009.

Early Death Means Health Care Savings

While there is much agreement about the need for health care savings we also need to agree on how we define good health services and outcomes.  CBO Director Elmendorf’s comment below needs our careful consideration:

"Even if successful, measures to reduce smoking and obesity—two factors linked to the development of chronic and acute health problems—might not have a substantial impact on health care spending for some time.  In the long term, spending on diseases caused by poor health habits could decline substantially, but the impact on federal costs would also have to account for people living longer and receiving more in Medicare benefits (for the treatment of other diseases and age-related ailments) as well as other government benefits that are not directly related to health care (including Social Security benefits)."

--Douglas W. Elmendorf; Director, Congressional Budget Office 

   Testimony before the Senate Finance Committee

   February 25, 2009

Prevention Is Not About Saving Money; It’s About Saving Lives

There are so many discussions going on about health that it is hard to keep track of which policy would make the most impact. Too often it is a case of holding on to the old models that defined the business of health care. Just as business has learned that fundamental aspects of their models were flawed the best health policies change some of the fundamentals of the current health debate. A good place to start is to rethink the purpose of prevention.

Prevention may save money and it may not. Last month Health Affairs reported that “... hundreds of studies have shown that prevention usually adds to medical costs instead of reducing them.” As The Washington Post pointed out, when prevention works it extends life and there are the costs of using health care over those additional years of life. Also prevention requires reaching large population groups and that requires resources.

The additional costs of prevention is a matter of what we value. The benefits of breathing with ease from not smoking, not dying young from cancer through early detection, or not having a heart attack from starting to exercise are well worth the costs.

The cost savings through prevention is not what should make it worth doing but rather how it contributes to the vibrancy and productivity of our society. Prevention is important simply because it is the right thing to do.

How Business Misses the Boat and the Consumer

St. John Knits represents what many executive women wear. I have shuddered at the prices but enjoy the basics and the decades of wear classic pieces provide. I also admit that I never paid full price. Many of my purchases were at last call sales and outlets. Nevertheless, these were investment pieces for many women.

So I wondered what George Sharp, Executive Vice President of Design for St. John Knits was thinking when he had Marie Gray (the founder of St. John) send a letter to her customers saying that the basic color black was being replaced by a new shade of black that would be their new standard. The new environmentally friendly collection would be called Caviar.

During these times does anyone think that women want to purchase new basics? Caviar is not black. And basics are basics. This is another example of how business thinking and strategic planning can lead people down a path that is no longer valid.

As for me this means that St. John is no longer the good investment. St. John is showing as much volatility as the market. One of my colleagues who usually paid full price will not buy the new and refers to her old classics as “Period St. John.” The lesson for business is obvious. It seems consumers adapt; and, we are not adapting by just buying more.

Charity Navigator - Why Many Good Organizations Are Not Listed

Charity Navigator only covers 5,300 organizations and while that may sound like a lot it is only a fraction of the not-for-profits in the U.S.

Did you ever wonder why that is the case?

At the National Alliance for Hispanic Health we are of course proud of our exceptional work in terms of health but we also consider ourselves to be a role model for our stewardship of our finances. We were concerned that somehow we had missed being listed by Charity Navigator. So we went through the process of submitting all the information that they required.

We waited and waited and received no response. Our most recent communication from them provided insight into their process.

“Thank you for contacting Charity Navigator. Due to the volume received, we are unable to give status reports regarding charities suggested for evaluation. Please know we have in excess of 1,800 eligible charities awaiting review. Given our limited resources, we dedicate most of our efforts to updating the financial information of those charities already in our database. We add new charity evaluations, but not as frequently as we have in the past. We will contact an organization prior to publication of a rating.”

It seems that that being listed in Charity Navigator is not as informative as some think. Better to do your own due diligence when you want to make a donation.

Meanwhile, we are still hoping that our $100 million donation will come with the next visitor we receive.