Pesticides cause illnesses is not new news.

For decades we have known about the hazards of pesticides and yet the headline from 34 minutes ago is "Pesticides Suspected in Spike of Illnesses in Washington State".  Try breathing the air in Fresno and you will understand why so many children there have asthma.  Workers throughout the nation have known about these hazards, complained about them, and pleaded for action.  At best they have received an acknowledgement of their situation.  We now have evidence about the hazards of some pesticides as endocrine disrupting chemicals.  The science is there but what is still missing is the will to act.

Science will Drive Innovation

El Mundo, one of the most prestigious newspapers in Spain, has a business supplement on innovation and entrepreneurship.  They invited me to write an article on innovation and it was published yesterday.  The original article in English is what follows below.

Innovation in health is being driven by two major changes—the science behind the understanding of health and disease and the expectation that consumers need to be better informed about their own health.

Science has moved us from looking at single causal factors to recognizing that there are many factors that impact on our health and that these factors are connected in ways that we previously were unable to measure. This means that innovation in health will be less about the separate parts of the body (heart, lung, brain) and more about the systems that are key to wellness. Our historic view of microbes as something that must be destroyed has been upended and provides a great example of why a change in focus from single causes and functions to co-dependencies is so important in understanding the mechanics of our health ecosystem.

We know that microbes are found in and outside of every person and for the most part help to keep your body working well. Some aid in digestion while others on the skin actually protect you from having harmful microbes pass through your skin. We need to be able to understand what they do and how to help them do what they need to do. Taking a systems approach to microbes requires us to collect and analyze data on our microbiome by looking at it as one interrelated system. And the solutions and business opportunities are in the products and technologies that work with this system.

At the same time, the vision of health that was defined by longevity is being recalibrated to focus on wellness, activity, and productivity and the quality of those longer years of life. With this new definition comes the demand for more information to be made available to consumers in a meaningful way. The Internet has trained consumers worldwide that information should be available within a few clicks. And this is especially true for the information about our own health and the health of others.

The blossoming area of biometrics and ways that this information can be gathered creates opportunities to market an array of new products. Professional athletes are the earliest beneficiaries of some of the new products that marry biometrics with giving immediate feedback.

For the average weekend fitness warrior there is now wearable technology embedded in clothes, e.g., smart fabrics, that monitor heart rate and pulse and transmit this information through wireless technology. A person can have the information sent to a cell phone or a computer where their every movement and its effect on their body can be studied and monitored. And the opportunities for innovation exist in the devices that are being developed, their use, the analysis of the data, and even in the development of protocols of what happens when there is a breach in a person’s privacy.

Innovation means addressing desires and wants even before a person recognizes there is a need. It is science that will be the key gateway to our future and the successful entrepreneur who will monetize it by new products or services.

Affordable Care Act and the Alliance

Between September 30, 2013 and February 23, 2014 the Health Promotion Advisers at the Alliance spoke to 15,862 consumers about what the Affordable Care Act means to them.  There were many important lessons but the top ten were:

1. All consumers know that insurance is important to have.
2. The state you live in makes a huge difference.
3. Consumers like to know what are all of their options.
4. Technology is a great tool but it is not enough.
5. Mobile platforms are essential.  
6. If you have never had health insurance, or even if you did, the language of insurance is confusing.
7. Comparisons based solely on monthly cost is the wrong way to make a selection.
8. Co-pays should be more accurately described as "you pay"
9. Coverage for mental health needs to be upfront.  
10. Conversations with an informed and trusted source are key.

Devious Maids is an Insult to Everyone

Raul Reyes' commentary in USA Today is on the mark http://www.usatoday.com/story/opinion/2013/07/09/devious-maids-latinos-tv-show-column/2461193/.  The new show "Devious Maids" should go into television oblivion.  While it is an adaptation of a novela (Spanish soap opera) the producers overlooked that in the Spanish original all the characters were Hispanic. That makes for a very different story line. The producers even missed in the translation of the title which in English would be, "They are the Joys of the Home."  

Just as damaging are the defensive statements that the story of the maids should also be told. Huh? It is not their story that is being told and most important of all the story where Hispanics are maids has been told so many times.  This type of show only reinforces stereotypes. 

We need other stories about Hispanics and there are plenty of good ones still waiting to be told.

Coca-Cola Joins BIO

I was reading today's POLITICO Influence that I receive by email when I was surprised to read: "COCA-COLA JOINS BIO: Coca-Cola Company has joined the Biotechnology Industry Organization. The trade group is expanding its multinational members. The group also added Scott Vitters, general manager of the PlantBottle Packaging Platform for Coca-Cola Company, to its Industrial and Environmental Section Governing Board."

Expanding its members?  When I looked at the webpage for BIO it indicated that it was the world's largest biotechnology organization http://www.bio.org/articles/about-bio.  Now that is what I call expansion.

Freedom is Not About the Size of a Sugar Sweetened Drink

Today, the Alliance was the lead signatory on an amicus (friend of the court) brief filed in the NY Appellate Division of the Supreme Court supporting the NYC Board of Health’s (BOH) public health rationale and authority to limit serving sizes of sugar sweetened beverages to 16 ounces in New York City food service establishments. The brief filing comes two weeks after a lower court ruled that the NYC BOH policy could not be implemented following a court challenge organized in part by the beverage industry.

While we were able to have many signatories to our Amicus Brief what was most interesting and challenging were all of those organizations that should have immediately signed on and who were silent.  If you are concerned about wellness and health promotion then you should be focused on those actions that support people be healthy.  

Instead what we found was that trigger words were thrown around to invoke a knee-jerk response but were often devoid of content.  The refrain that people's "freedoms" were being attacked seem not only misguided but made light of the very concept of freedom.  More than anything it is very sad to see the effect of financial pressure placed on organizations to make decisions that are contrary to their espoused mission.

It is a reminder that decisions based on integrity are priceless.

Forget about pay for performance (P4P)

The principles of behavior modification demonstrate the importance of incentives. What is also well documented is that extrinsic rewards, i.e., financial incentives, have limited impact on complex behaviors.  Moreover, extrinsic rewards are most effective with young children. 

Consequently, based on the science of human behavior P4P would result in the desired performance in very limited settings and situations. We should not be surprised by the outcomes that we have experienced by applying P4P to health care...more money is not the answer.  

http://content.healthaffairs.org/content/31/9/1932.abstract?sid=6eb2c26a-18b9-4a35-a1cc-5b44b41c8ca2

When Setting Targets Misses the Mark

The solution to the problems we face in health care are frequently reduced to one sentence pronouncements.  National health care is put forth as the best answer and in the same breath the National Health Service, a la British model is lauded as the way to go. And while that model may have elements we may want to adopt (home visits for parents of newly born infants) we also need to be well aware of its failures.

Today's New York Times on Page 9 describes the recent report which looked at conditions at Stafford Hospital in England from 2005 to 2009 where care became so negligent that, "...patients left unbathed and lying in their own excrement and urine..patients left so thirsty that they drank water from vases..."  It seems that they were trying to meet health service targets and balance the books. While many of the senior managers were let go, the top regional person is now at the helm of the National Health Service in England and it seems that no one lost their license because of the way patients were treated.

There are many lessons to be learned from Stafford hospital.
http://www.nytimes.com/2013/02/07/world/europe/hospital-report-cites-appalling-suffering-in-staffordshire.html

Epilogue: Case Study Ellen—Good Policy is Not Enough

These last few months have been so intense.  I have seen health care providers who struggle as they try to care for patients while others acted as if caring for a patient was a burden.  It was at the point of patient care that I saw the greatest variability in how someone was treated.  

I remember the nurse in the step-down unit who had said that the IV should be changed every 72 to 96 hours and became annoyed that after 96 hours I asked how come the IV had not been changed.  Her response was that she was dealing with more pressing patients and she would get around to it.  It was clear that the needs of the individual had become either dominated or subservient to some benchmark or target. This is not the health care any of us want or deserve.

As all this occurred I contacted the leadership at Georgetown University Hospital and they were responsive to my many concerns.  They  made it clear that the policies they had developed had not been followed.  All were apologetic and all apologies were accepted but the bottom line is that the patient suffered and died.

Part IV: Case Study Ellen— Another Trip to the ER

I returned to DC on Monday and my intention was to visit Ellen at the Rehab Center and see how she was doing.  The plan was that she would be there for a while to regain her mobility and then go home.  As I was driving I decided to call Ellen's daughter to see how things were going.  

She let me know that the Rehab Center wanted to call 911 and have an ambulance take  Ellen to Suburban Hospital.  Ellen's white blood cell count was high and they felt she needed to be taken there even though her primary doctor was affiliated with Georgetown University Hospital (GUH).  We were told that the Montgomery County ambulance would not take her to GUH which is located in Washington, D.C.  The only way Ellen could get to GUH was by hiring a private ambulance. And so we did.

So once again Ellen, her daughter, and I were on our way back to the ER.  This time I  let the Georgetown staff know we were coming ahead of time.  We were glad that Ellen was put in the same area designated as Fast Track B. We chuckled about what "Fast Track" means.  

This time Ellen had a wonderful nurse (Jason) who did all he could to make her comfortable.  The 4th year resident (Bobby) had a good disposition and was very patient with her. Ellen had blood drawn, ultrasound of a swollen leg, chest x-ray, and answered many questions. The physician on duty told us that her white blood cell count should not have been alarming as that may have occurred because of some of the medicines she was taking.

In the end they released her to go back to the Rehab Center.  There was nothing wrong with her or perhaps more accurately there was nothing found that could be fixed. Consequently, at 2:20am on Tuesday Ellen was transported back to the Rehab Center by the regular ambulance service.  On Thursday at 1:45pm Ellen died.

Part III: Case Study Ellen— Shades of Patient Dumping

Ellen's daughter, Ann, had been told that Ellen would be moved on Monday to a Rehab facility and so Ann had gone to visit other family members in Delaware to discuss the situation with them. Ann felt that her mother was in a safe place--- Georgetown University Hospital.

Saturday at about 6pm I was called by a representative of Georgetown University Hospital (they meant to call Ann) and was informed that Ellen would be moved that evening to the Rehab facility.  I told the woman that I was the friend and not the daughter and thought it was a terrible idea to move her.   It seemed that now that the insurance had been approved that they were going to move Ellen to the Rehab facility. I let the person who called me know that the person she needed to talk to was Ann (Ellen's daughter) and gave her the correct number to call.  

How had this situation come about?  It seems that Saturday during the afternoon a physician called Ann to confirm the DNR that Ellen wanted and Ann said yes she understood that is what her mother wanted. There was no mention that she was going to be moved that evening.

The move on Saturday was totally unexpected and far from good or responsible care.  Ellen was weak, fragile, and readying to go to sleep when she was disrupted with the news that she would be moved.  A person too weak to go home and yet moved on a Saturday night. One can only imagine the enormous amount of stress this put on Ellen.

Is this patient dumping.  How could anyone have allowed that?  This is not the way that patients or their families should be treated.  

Hispanics and the Undocumented.

A few months ago I presented at a conference at the National Institutes of Health (NIH) and was reminded by the comments that people make that too often what people think about Hispanics is framed by their perception of undocumented people.   The assumption is that all undocumented persons are Hispanics and if there are alot of Hispanics...it is probably because they are undocumented and shouldn't be getting services anyway.

The numbers are pretty straight forward.  We know that there are 313 million people in the U.S. and about 55 million are Hispanic.  Of the estimated 11 million people in the U.S. that are undocumented fewer than 8 million are Hispanic.  This means that assuming every undocumented person is included in the count of 55 million Hispanics that 47 million Hispanics are in the U.S. legally. But people like having myths and scapegoats.

One of the proposed reasons for the rise in health care costs is that "all those" undocumented persons are using health resources.  The facts according to the Pew Hispanic Center indicate that 41% of undocumented persons have health insurance and those that do not have health insurance either pay out of pocket or tend to avoid the health care system.  The goal of undocumented workers is to work and not be noticed.  That is why going for any type of health service, especially any which may require an interface with a government agency, is avoided.

So do we have a health crisis in the U.S.?  Most definitely.  But don't blame it on persons who are undocumented.

Part II: Case Study Ellen— Water, nutrition, and the right mattress

My 83 year old friend Ellen was admitted to the hospital because she was dehydrated and very weak.  While in the ER I was told that she also had the beginnings of a bedsore. And while I was glad that she was admitted there were some observations that raised concerns:

• Just like in the ER health care professionals end up spending more time in front of a screen than in direct patient care.
• On Day One Ellen was given a large container of ice water with a straw so she could drink water.  The person who brought it did not realize she was too weak to either lift the container or suck from the straw.  I asked that she be given water in a cup and it was written on the board.  When I came back on Day 2 there was a pitcher of warm water that she could not lift and the glass. I got her ice water and filled her cup.  During the time I was there she drank 8 ozs of water.  I told the nurse how much she had to drink but I don't think anyone was really monitoring her intake even though the reason she was admitted was dehydration.
• Ellen had asked for tissues and while I was gone they left her two boxes---unopened.  I had to open one for her the next day when I returned.
• Since Ellen is very weak she is not able to eat very much.  I asked if they had Ensure and they said yes. I asked that she be given chocolate Ensure because she will usually drink it.  She was given vanilla.  When I inquired I was told, "... they send what they have."  It was not till Day four that she finally got the Chocolate Ensure.
• Although the beginning of a bedsore was pointed out to me while in the ER, Ellen was not given the special mattress to decrease the likelihood of the bedsore getting worse. 
• The care team is supposed to write their name but the only ones who did so were the nurses.

Better than most, I understand the stressors in health care, but some small low cost actions ( water, edible food, the right mattress) would definitely make the patient experience one conducive to getting better.

Part I: Case Study Ellen— If It is Weds. Night I Am in the ER

Over the past four weeks I have spent three Weds evenings in the ER with a friend (two times with Ellen and one time with David). One time at Sibley Memorial Hospital (part of Johns Hopkins Medicine) and twice at MedStar Georgetown University Hospital.  I wish that I could say that one experience was better than the other but the reality is that neither ER was what I had hoped.  They both shared some concerning similarities:

• Both had staff who spent more time in front of a screen than with patients.
• It was hard to know who could answer questions.
• Getting admitted into a room required waiting, and waiting, and waiting.
• There was no privacy...everyone hears everything...so all the HIPPA stuff seems irrelevant.
• Cleanliness did not seem a priority.
• Getting a glass of water was challenging.
• The transition from the ER to a hospital room took too long.

The major takeaway is that people go to the ER when they do not know what to do or when there are no other systems to take care of them.  That certainly was the case for the patients who's assessment I could hear through the curtain that separated us: the person who had a problem with alcoholism and was recurring visitor to the ER, the person who would go to a psychiatric unit because she said she had no place to get her  medication, as well as the person who was in a nursing home and prone to falling.  

Everyone waited patiently because it was clear that the ER needed help. 

Gastric Surgery for Diabetes

Type 2 diabetes is a complex condition that we are only beginning to understand, type 1 diabetes is an autoimmune disease, and type 1.5 is a new condition that we are beginning to study. Nevertheless, the media has latched on to two new medical studies and named gastric bypass surgery the new diabetes cure for type 2 diabetes.

I understand that people want quick solutions. I also know that one's relationship with their weight and stomach is complex. But your stomach is not just part of your "beauty" or "physique" nor is it just about digestion. Your stomach is the home for the many good microbes you need that help control your endocrine and immune systems.

Keep in mind that your body has 10 trillion cells and 100 trillion microbes that all work to keep you healthy. How exactly these microbes work is part of an evolving science. Some good information on the microbiome was provided in a recent Wired magazine. You can also learn about the brain in your gut by viewing the TED presentation by Heribert Watzke: The brain in your gut.

So anyone who encourages the cutting out of parts of the stomach as the answer does not understand the relationship between the stomach and health. The surgeons who advocate cutting do not address what happens to your microbiome, i.e., the healthy bacteria in your gut, that we are now learning are so important to our endocrine and immune systems.

Gastric surgery is not the answer.

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.