Neil Calman MD

How to Guarantee Disparities in Health Outcomes: A Primer

2009-11-21T18:50:00.004-05:00

Bradford Gray, PhD, a distinguished health services researcher has published a very important study which demonstrates yet another reason why our health care system is designed perfectly to get the disparities in health outcomes that result.(1) Dr. Gray and his colleagues concluded that “minority patients in the New York City area are significantly less likely than whites to be treated at high-volume hospitals for cancer surgeries, cardiovascular procedures, and other services for which high volume and positive outcomes are related”. In other words, racial and ethnic minority patients are much more likely to get essential procedures done at hospitals that do fewer of them per year – a factor well known to contribute to poor health outcomes.

For those of us who provide health services in New York City none of this is a terrible surprise. We all know that those specialty hospitals that advertise on radio and television that they provide the best care in their field – Memorial Sloan Kettering for cancer, Joint Disease and the Hospital for Special Surgery for orthopedics, NYU’s Rusk Rehabilitation Institute and Calvary Hospital for end of life care – all have policies which restrict, or at a minimum strongly discourage the uninsured and those covered by Medicaid – from seeking care there. The proof of this is that these institutions are all in the bottom 15 of 59 hospitals in New York City in the percent of uninsured and people on Medicaid admitted for treatment.(2) Ironically, the well-to-do among their patients, often grateful for the exquisite care they receive there, donate money to these institutions – those that provide the least charitable care.

Bronx Health REACH is a consortium of over 40 community and faith based organizations that has been working in the Bronx for over a decade to reduce – no, eliminate – disparities in health care treatment and health outcomes. We have been working to change the policies which create racial disparities in out-patient care in the voluntary hospital sector in New York City. In facilities that operate “clinics”, the clinics are the places where the poor are treated in a system that provides care that is inferior in many aspects to the “private” care given in other parts of the system. Students, interns and residents - often supervised by a rotating group of attending physicians – are the main health providers that patients see. Troublingly, these doctors rotate monthly through the clinics making continuity of care almost impossible. The clinics have very limited ability to coordinate care with referring community physicians, another cause of discontinuity. Obviously, these doctors are also the least experienced, and these factors together explain, with an unproven yet logical extension of Dr. Gray’s research, another reason why outcomes can be expected to be worse. Everything that contributes to inferior care contributes to the premature death and disability people of color in New York experience.

Like I said before, the system of care in New York is designed to get just the disparate outcomes it achieves. Let’s redesign it.

References:
1. B. H. Gray, M. Schlesinger, S. M. Siegfried et al., Racial and Ethnic Disparities in the Use of High-Volume Hospitals, Inquiry, Fall 2009 46(3):322–38
2. New York State SPARCS Hospital Discharge Database,Table IX

For Medical Students: Primary Care, the Uninsured and Painful Lessons that Lie Ahead

2009-11-14T08:36:00.002-05:00

On a rainy and blustery evening last week, I had the pleasure of speaking to an amazing group of first and second year medical students at Downstate Medical School in Brooklyn – part of the State University of New York. I am not sure whether they came for the Thai food or to hear me speak but I had the opportunity to tell stories of my medical school, residency and practice experiences – each highlighting some of the fundamental values underlying primary care. My message was that patients are increasingly demanding primary care as a trusted way of negotiating an otherwise incredibly confusing and fragmented health care system. I stressed that primary care physicians must stay focused on the needs of their patients above all else and that our loyalty and responsibility towards our patients must always remain first and foremost in our minds and actions – unfettered to the maximum extent possible – by advertising and loyalties to our hospitals or peers.

As I wrapped up my comments two questions came from the audience. The first, quite predictably, concerned my feelings about the “government controlling health care” and how I felt about that. I asked if the young woman asking the question from the very back of the room was asking about the much debated “public option” in the current health care plan passed by the House last week and she nodded affirmatively. I explained that the plan does not call for the government to control health care, rather that we would be adding another type of government subsidized and managed health care plan to the already existing government plans – namely Medicaid and Medicare.

A tougher question came from a young man in the front of the room who asked how our community health care system could survive financially taking care of the number of uninsured that we currently cared for. And that question truly cuts to the heart of the health reform debate, though I wasn’t fast enough on my feet to realize it at the time. Our 24 site community health care center network in Manhattan, Bronx and the Mid-Hudson Valley cares for over 10,000 uninsured individuals and provides them with over 35,000 visits a year. I explained that to pay for this we literally cobble together funding from dozens of sources. Our Federal 330 grant pays for some, New York State indigent care funding picks up another piece, and grants that support the care of the Homeless, the care of some uninsured patients affected by HIV and dozens of other grants for sub-groups of our uninsured patients – all go to support this work and keep us afloat. I stood there proud that our organization – the Institute for Family Health – had been able to accomplish this.

Yet I missed a real opportunity to underscore the fundamental reason we need health reform in this country. People need health insurance. Our country cannot depend solely upon health centers like ours as the safety net for everything patients who are uninsured need for their care. They must have coverage to pay for all the essential health care services they need. Primary care is the front end of an entire health care system which must provide access to people for diagnostic services, treatments, hospitalizations and medicines. With people of color 2 to 3 times more likely to be uninsured in New York City providing insurance for everyone is an absolutely essential step towards eliminating racial and ethnic disparities in health outcomes. And with primary care providers already struggling to create viable practice models in underserved areas, only full insurance coverage of the people who need these providers can sustain these practices and attract new doctors to these areas.

I am sorry I missed the opportunity to explain more to the students in Brooklyn last week about the failings of our current health care system. But I am not worried that their education will be lacking for very long. Soon the students will begin their clinical rotations in the hospital and there they will no doubt experience, first-hand, the failings of our current system to provide health care for all our people. They will see people suffering the effects of poorly treated chronic diseases – losing their legs and their kidneys to long-standing diabetes. They will see people with cancers that would have been curable if only they had been detected earlier. They will see people with advanced infections that have gone untreated for days or months and now require prolonged hospitalizations. These lessons will hit hard and perhaps some of them will understand and will choose to become the next generation of primary care physicians and the new champions for needed change in our health care system.

CNN Report on Aparthied in Medical Care in New York City - a follow-up note

2009-07-22T00:36:00.006-04:00

(The message below was posted on Anderson Cooper's blog in response to many comments recieved about the show that aired on July 20 on AC360. It is scheduled to air again on Saturday July 25 on Dr. Sanjay Gupta's House Calls)

My name is Dr Neil Calman and I was the physician interviewed by Dr. Gupta for the segment on racism in medical care. For those of you who may have missed it you can see it by clicking on the link below:

http://www.youtube.com/watch?v=8j51CYlSFRQ

First, I would like to express my appreciation to CNN, Anderson Cooper, Dr. Sanjay Gupta and his senior producer Caleb Hellerman for a thoughtful and accurate portrayal of the difficulties people of color in New York (and certainly in other parts of the country) have in obtaining good medical care. This report was the result of an investigation of the named hospitals in New York City done more than a year ago and which formed the basis of a complaint to the New York State Attorney General.

I also sincerely appreciate the many comments on CNN’s blog from patients – many of whom were not Black - who were also misdiagnosed, mistreated or otherwise received inadequate care and concern for their medical problems. These stories require our attention as American’s receive grossly inadequate care while our country spends 2 to 3 times more per person than some other countries that achieve far better outcomes and whose residents live longer and healthier lives. That is why we need health reform and need it now. It also speaks to the need for more primary care physicians – so every person in America that wants one, can have an ongoing, supportive relationship with one main provider who cares for almost all their medical needs and advocates for them when they need to see a specialist or when they need specialized care or a special procedure.

I want to address the issue that being Black is not what the CNN story was about but rather was the same story that could be told by poor or uninsured white people as well. Telling the story of only a few Black ministers in the Bronx was not meant to suggest that the problem was exclusively one faced by people of color. The people interviewed were just examples of over 100 phone calls made and recorded by our researchers who looked at how people were sorted into different models of care in New York City based upon the type of insurance they have. In New York City, because of the predominance of Blacks and Latinos among the uninsured and those on Medicaid, sorting people of color into systems with less well trained providers, no continuity of care, no emergency call systems and no communication back to the patients primary care provider – all contribute to the inadequate medical care that many receive and contribute to the poorer health outcomes Blacks experience.

Some people say that its all about education – or poverty – or lack of insurance. In fact, imagine that each of these things – education, financial well-being and good insurance coverage – are all things people need to get the best medical care. And also imagine – what hundreds of published studies have shown – that race, independent of all these other factors, is a predictor of poorer health care processes and poorer outcomes. If you imagine this, then you can understand that the question is not which of these factors is more important – but how many strikes do you have against you when you seek medical care. Race is one factor and being Black or Latino is one strike. Being poorly educated is another strike – especially when that means a poor understanding of the diseases that are important in your own preventive care plan, your family’s health or the diseases most prevalent in your community. Lack of financial means may create a situation where you put off, sometimes indefinitely, needed preventive care measures or put off buying the prescription drug not covered by your health plan. And being uninsured is a fourth strike as it is the greatest predictor of bad health outcomes.

Racism in health care is a common experience of people of color so let’s stop saying that race does not matter. We know it does. It is one very important factor in why people get bad medical care. . So is poor education, poverty and lack of insurance.

Our health care system needs to do better. We need to fight racism in medicine wherever it occurs and that is what the CNN story is about. We also need to get health reform passed now! That will largely fix the insurance issue. We need many more primary care physicians so everyone can have a trusted physician they know over time and who will care for all their basic medical needs. And we need a better campaign to educate all America about the importance of preventive care, good care for their chronic illnesses and about the health behaviors that can help them lead healthier and longer lives.

As President Obama points out – this is not a debate over politics. Everyone knows we need to fix our very broken health care system. Everyone has a horror story to tell somewhere in their personal experience or the experience of their friends or family. We have to do better than this and we can.

Sexism Effects Clinical Decision-Making as Well

2009-07-25T21:12:00.003-04:00

In repsonse to my last two blog posts, a number of readers responded that women, not just people of color, experience bias and disrespect in the health care system. This brought to mind a study done over 20 years ago by a brilliant colleague of mine, Dr. Jonathan N. Tobin. His 1987 Study published in the July 1 issue of the Annals of Internal Medicine (Volume 107, pp 19-25) revealed that there was substantial "Sex Bias in Considering Coronary Bypass Surgery".

The abstract of that study reads in part:
" In a study of 390 patients consecutively referred for nuclear exercise testing, abnormal results found in 31% of the women and in 64% of the men affected physicians' decisions to recommend catheterization in men only; 4% of the women with abnormal radionuclide scans were referred for catheterization compared with 40% of the men (p < 0.001). This 10:1 ratio was independent of age."

Gender bias, racial bias, bias against obese individuals, bias against those who speak a language other than English - all affect the care that patients recieve in the health care system. And they have secondary effects as well - as some of the commentors on my previous blogs pointed out - they make one loathe to go to the doctor at all. And with no medical visit, the odds are that people neglect needed preventive care and comprehensive care for chronic conditions. Can this problem be helped through training? Perhaps. But we have a very long way to go. And tragically - for decades since the Tobin article was published, there is little evidence that we have made any substantial progress.

Medical Apartheid In NYC Voluntary Hospitals

2008-08-29T00:20:00.005-04:00

On June 9, 2008 a complaint was filed with the Attorney General of New York State, Andrew Cuomo, by Bronx Health Reach, a coalition of faith based and community based organizations with health and human services providers. The complaint describes descrimation against people who are convered by Medicaid and the uninsured when they seek out-patient medical care in New York City's Voluntary Hospitals.

See July 18, 2009 Blog post for more detailed information.

CNN AC360 Dr. Sanjay Gupta Covers our Attorney General Complaint Re: Dsicrimination in NYC Hospitals

2009-07-18T07:41:00.005-04:00

Bronx Health REACH Attorney General Complaint to be featured on CNN's AC 360
Segments Produced by Dr. Sanjay Gupta – Monday July 20
10pm-12midnight [1]

Monday night, July 20, 2009, on CNN’s Anderson Cooper 360, Dr. Sanjay Gupta will be airing a two-part segment on racial discrimination that results from separate and unequal care provided by private teaching hospitals in New York City. Since 2005, Bronx Health REACH has shown, through its research efforts, that in many institutions in NYC, people covered by Medicaid and those who are uninsured are routinely treated in separate hospital-based facilities and by different providers than those who have private insurance. Furthermore, inadequate after-hours coverage, absent communication back to referring providers, and limited appointment availability all create disparities in care and lead to worse health outcomes. Because 16 times as many African-Americans and Latinos in the Bronx are covered by Medicaid or are uninsured compared to Whites, this creates de facto discrimination based upon race, a practice that is both immoral and illegal.

As you may remember, in June 2008, Bronx Health REACH, a coalition of community-based, faith-based and other organizations led by the Institute for Family Health, filed a civil rights complaint with the Office of the Attorney General of New York State. This complaint and the allegations contained in it were prepared and filed on behalf of Bronx Health REACH by New York Lawyers for the Public Interest (NYLPI).

Through multiple visits to New York accompanied by his producer and film crews, Dr. Gupta has interviewed faith leaders, patients, and REACH staff to bring this issue to light. The REACH Coalition has been working in the Bronx for nearly a decade to reduce racial and ethnic disparities in health outcomes for patients with diabetes and heart disease. Our hope is that national exposure of this issue will help end these practices in New York City and will make sure that equality in health services becomes part of our Nation’s health reform agenda.

REACH began its investigation of the out-patient referral practices of three hospitals named in the complaint - Montefiore, NY Presbyterian, and Mt. Sinai – after hearing multiple stories shared by patients in the coalition’s member organizations, as well as learning the experiences of primary care providers seeking to obtain out-patient specialty care for their patients. In consultation with researchers from New York University, hundreds of scripted phone calls were made and recorded over a period of months to the physician referral lines of the named institutions. In addition, REACH obtained the recorded testimony of a number of patients who experienced this discriminatory care and suffered because of it.

Our research findings show systematic channeling of patients into different care systems based upon their type of insurance – or lack thereof. As documented in our complaint and other findings over the years, it is commonplace for New York’s voluntary teaching hospitals to separate patients at the point of entry to their outpatient practices into two systems of care: their clinics and their faculty practices. Worse yet, while the faculty practices function the way we would all want to get care—with good continuity, reports sent back to the primary care providers, after-hours call by the group’s doctors, and access to the best that New York medical care has to offer—the clinics offer patients a rotating group of residents and fellows with little or no continuity of care; provide no communication with the primary care providers who referred their patients there for care; and often refer patients to the Emergency Room if they have questions or problems after-hours. Given this difference in care systems, differences in outcome should come as no surprise.

I know you all believe we can do better than this. We must do better, particularly as we promote the concept of medical homes for patients throughout New York State, and health reform at the national level. The vast sums of money that the State and Federal government put into health care for those who receive Medicaid and the uninsured obligate us to do better. In fact, recent increases in Medicaid out-patient rates mean that hospitals are now, in many instances, getting paid more by the State than private insurance is paying for their covered patients – and getting inferior care.

For far too long the health care system has blamed patients for their own poor outcomes, pointing to their delays in seeking care, their inadequate follow-up with appointments and their lack of compliance with treatment. The experience of the more than 100 primary care providers at the Institute for Family Health, and the experience of the members of the organizations of the Bronx Health REACH coalition tell a different story. New York’s voluntary teaching hospitals have created clinic systems that are difficult to negotiate, that provide care that patients quickly realize is not the best the institution has to offer, and that severely jeopardize their health and their lives. While these factors alone do not explain the 7 to 8 year decrease in life expectancy that Blacks and Latinos experience in the U.S., nor the increase in hospitalizations for conditions that are treatable in office settings and the excess morbidity and mortality suffered by people of color for almost every disease studied, we must change those aspects of our health care system that contribute to these tragic and disparate outcomes.

Filing a complaint with the Attorney General was a last resort to fix a problem I have been addressing on behalf of Bronx REACH and the Institute for nearly a decade. I have met personally with leadership from a number of voluntary teaching institutions in New York City, have presented findings of our studies at dozens of professional meetings, have had multiple discussions with the Greater New York Hospital Association leadership, and have discussed this issue with the former Commissioner and senior staff of the NYS Department of Health on multiple occasions over the years. In 2005, we published a report Separate and Unequal: Medical Apartheid in New York City, which received substantial press coverage and resulted in a number of public responses from voluntary hospitals. In private discussions, many agree that systems should be changed, but there has been no motivating force to stimulate this change.

I expect that the institutions named will once again be highly critical of the complaint and the CNN report, and will defend their practices in the same ways they have previously. First they will claim that faculty practices are not part of the institution but are merely affiliated private practices. This argument is both spurious and irrelevant. Personnel who are paid by the hospital and staff their physician referral lines, facilities that are licensed to the hospital, and systems that the hospital has established are sending people down different paths of care based upon their insurance status.

Next they will claim that billing requirements make it essential that clinics are run separately. This is also not true. Nothing prohibits privately insured patients from being seen in a hospital licensed out-patient facility, and doing so would not jeopardize private insurance payments in any way.

Finally, some will claim that they will be unable to attract patients from the suburbs and from outside the country if the services they offer must be integrated with the care of clinic patients. This is perhaps the most disturbing rationale of all. I invite leadership of these institutions to come to our Institute practices where corporate executives, patients referred from our homeless centers for follow-up, and a broad cross-section of New York comes for care, sit in the same waiting room and all have access to the best care we have to offer. As health care providers we, of all people, need to demonstrate a commitment to ending discrimination based on insurance status with the disparate impact it has on racial and ethnic minorities.

Traditions and long-standing systems do not die easily, but this one can and must. We have encountered a number of departments at each of the institutions where department leadership—either for moral or practical reasons—have decided to integrate the care of all patients into the same system. Hospital leadership should take note of these successful models in their own institutions and adopt their practices broadly and completely. Nothing less than that will provide our patients with the care they deserve and nothing less than that will help to eliminate the disparities in care that continue to exist in our institutions.

Please make time to watch Anderson Cooper 360 on Monday night, and share your thoughts with us by commenting on this blog. Please join me in encouraging our colleagues in voluntary teaching hospitals across New York City to address this longstanding injustice and inequity in care.
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[1] As with all news broadcasts, changing current events may necessitate changing the broadcast date or time of these segments

Teaching Our Doctors and Our EHR to Speak English (and other languages)

2008-02-16T15:39:00.019-05:00

Mary Sampson waited in Exam Room D for her bimonthly blood pressure and blood sugar check. She was a relatively new patient in my practice who I had only been seeing for a few months. Upbeat and proud of the great control she maintains of her hypertension and diabetes she always greets me with a hug and a smile and asks about my family before I even get a chance to ask about her. Her eyes were red today and she had been crying. “I am so worried”, she said. I cancelled my last two appointments because I couldn’t face the bad news. She held out an envelope for me to take it. It was a letter from me, and I was mystified by her reaction. Had I sent her a letter with bad news and forgotten it? I took the envelope from her hand and pulled the letter out to read it aloud. Mary sat with her eyes closed and her hands clenched together.

“What is wrong?” I asked her.

“Just tell me what I need to do, OK?” She replied.

I looked at the page I remembered spitting out of our electronic health record one evening at home. It was the letter I send all my patients after I receive lab results, diagnostic test results or consult reports. This one was formatted to report on normal mammography results.

I read it our loud.

“Dear Ms Sampson,

I am writing to report that your recent MAMMOGRAPHY WAS NEGATIVE. You should schedule your next exam in approximately 1 year. If you have any questions or concerns please feel free to call me at the office or on my cell phone.

Sincerely,

Neil Calman MD.”

“What do I do now?” she asked again.

“You wait and get another exam in about one year”.

“But what about the Negative test now?”

“Negative is normal!” I exclaimed. “Did you think it meant you had a problem?

Mary was speechless. Tears flooded down her cheeks. I stood up to hug her and repeated “I am so sorry”, over and over again. She slowly regained her composure after leaving a pile of damp tissues on my desk.

“I never got a letter from a doctor before, she said. I looked at it quickly and saw the word ‘Negative’ and I thought I had cancer. I have been so worried the past two months I didn’t even want to show the letter to my husband. He doesn’t know anything about this. He has a bad heart and I thought this would kill him.”

“Mary,” I said reassuringly. “Everything is perfect.”

Unintended consequences of progress, you might call it. But as with many seemingly trivial mishaps in the course of primary care practice, there are important messages contained within.

In 2002, as President of the Institute For Family Health, I led the implementation of EPIC (Verona, WI) one of the Nation’s most sophisticated and highly rated (KLAS Market Intelligence) health information technology programs in our network of thirteen community health centers in the Bronx and Manhattan, New York. Contrary to many horror stories in the health information technology literature, the 90 physicians, social workers, nurse practitioners and family medicine residents who work at the Institute welcomed this development heartily and immediately put some of its most powerful tools to work. Through training classes, on line instructional sessions and individual mentoring, in a few months we were almost completely paperless.

One of the most exciting parts of implementing electronic health records is how they help our communication with patients - at least most of time.

Restructuring Workflows to Incorporate the EHR

Prior to the implementation of the EHR we had done everything we were all taught to do to keep patients separated from their medical record and the information it contains. We kept charts outside the exam room door so patients could not look at them while they waited. We wrote in a complicated professional style with abbreviations that often were ambiguous and were sometimes not even understood by our colleagues when they covered for our patients and tried to use our notes. Many of us had handwriting that resembled hieroglyphics except that no historian had been successful in providing a book to assist in their translation.

Whose record is it anyway? Few patients go through the formal processes we put in place for them to examine their own records. Times have changed. Patients want to know so much more about their health and the Internet has provided limitless opportunities to access information on any health care issue of interest. Physicians have come to realize how extensively our patients’ lifestyle choices determine our ability to influence their health outcomes. Our relationship with our patients must become one in which we, as their doctors, serve them. They must have ownership of their health information, understand their health care needs in health and disease and understand how to obtain optimal care for themselves and their families.

We viewed the EHR as a tool to bridge the information gap with our patients and made many decisions in the setup process to enhance this.

We specifically rejected the option of portable wireless touchpad computers as they have screens which are visible only to the provider, and are often held cradled in the provider’s arm, preserving the secrecy of the paper charts they replaced. Even though not all patients choose to look at the monitors, the availability they offer creates a bridge of trust and improves the provider-patient relationship.

We chose to redesign the encounter to put the review of prior information in the context of the current day’s encounter, and use this as an opportunity to involve the patient in his or her own care.

Providers enter the exam room unprepared by prior review of the patient’s record. Their review of the record and any activity since the previous encounter is done in collaboration with the patient. Looking at the computer screen together, the provider might say, “Let’s look over the note I wrote on the last visit to make sure we have followed up on all your issues.” Then, “Now let’s go over all the reports that have come in since your last visit ... two consult reports and your blood test results.” Rather than being insulted by this, patients are immediately drawn into reviewing their own records with their provider at their side, where a discussion of the results and necessary follow-up are facilitated. Copies are printed for the patient to keep at home with their medical records.

But there is a flaw in our system, a serious one which must be addressed and that flaw is that health care professionals do no speak English the way other people do. We write funny and speak about patients in an unnatural way.

“The patient did not comply with my diet instructions.”

“The patient appears in no acute distress.”

“ This is a 34 year old Hispanic woman who appears to be her stated age.”

When I started going over my previous notes with my patients I realized how ridiculous these notes were. People were genuinely confused. Most were too polite to comment but some turned away from the computer and simply blanked over as I read the medical history, exam findings and plans from the past visit. I started imagining what my patients were thinking as they translated my writings into common English.

“head – normocephalic” (Is that better than just plain ‘normal’)

“lungs clear to auscultation” (I don’t remember anyone named ‘auscultation’ listening to my lungs)

“reflexes 2+ bilaterally” (Is that 2 a good score – shouldn’t they be a 10?)

“thyroid not palpable” (Nobody ever told me I didn’t have a thyroid gland. I wonder if I need one?)

“Babinskis down” (I never even knew I had a Babinski. Shouldn’t they it be up?)

I was also amazed at how many times we qualify what the patient tells us like we are always suspicious that they are lying to us.

“The patient denies having sexual intercourse for the past 6 months”

Even referring to our patients as “the patient” itself is a ridiculous was of depersonalizing the medical encounter.

Printers in Every Exam Room Promote Patient Education and Involvement

Another example of the critical decisions that need to be made in the set-up of hardware is the location of printers. We decided to install printers in every examination room so that information could be produced for patients as part of the entire encounter process. This not only improved the patient flow in the center, but made the vast resources of the EHR instantly available to both the patient and the provider. It also insured the confidentiality of patient information, eliminating the possibility of a document being picked up off a central printer and inadvertently handed to the wrong patient.

At the start of the encounter, while reviewing lab results and returned consult reports, the provider can print copies for their patients on the spot. The workflow used by most providers next involves a review of the nurse’s notes and the vital signs taken when preparing the patient to see the provider. Vital signs, as well as all lab values, can be trended, graphed and printed for patients. The most common use of this function is the printing of progress charts of weight or blood pressure, graphing patients’ improvements (or lack thereof!)

It is well known that patients frequently do not take all the medications they were prescribed.[i] The EHR permits providers to review the list of current medications the patient should be taking, and print a summary for them as well. Prescriptions are printed in the exam room, as are requests for labs and specialty consultations. All of these documents become part of a package of health information that the patient can take with them and keep as part of their personal health records.

Patients Leave the Center with a Full Report of Their Encounter and Follow-up Recommendations

Studies of patients leaving their doctor’s office indicate that they rarely have a complete understanding of what was done and what they are supposed to do next.[ii] To combat this, the Institute designed an “After-visit Summary” that contains patient-friendly headings and a printout of all issues discussed in the day’s encounter. The summary includes patient identifying information, a list of their measured vital signs, the chief issues as told to the nurse, the provider note, a complete problem list, a summary of active medications, any new orders written for the patient, including consultations, imaging studies, lab tests, and immunizations or medications administered in the center. Providers who use this feature regularly in our practice report that their patients remind them to print the After-Visit Summary if they forget to do so at the end of an encounter.

Reading the Afer-visit summaries is another issue altogether. Aside from the obvious problems of providers using medical terms that patients do not, for the most part, understand there is the additional issue of abbreviations that are totally meaningless to those who have not studied medicine. Some would say we made great strides in developing list of “approved abbreviations” to avoid clinical error s and improve doctor to doctor and doctor to nurse communication but we have not even begun the journey of translating these abbreviations into English – another frontier altogether.

When I type PND into our computer I get “PND” on the screen. When I type “.PND” the computer spells out Paroxysmal Nocturnal Dyspnea. But that is programmable. What I want to do is tell the computer that “.PND” should be written as shortness of breath at night when lying down”. Better yet, if the patient’s primary language is Spanish and is so designated in the EHR, “.PND” should be translated to “falta los respiraciones por la noche cuando esta acuestado.” In that manner we will truly be improving communication with our patients – both in the exam room and when we share our written summaries with them to take home.

Lab Results

The mysteries of laboratory reporting have also puzzled my patients since giving them copies of their labs to take home or sending them in follow-up letters. Scientists have standardized many lab results in International units or mg/dl (milligrams per deciliter) measures. Imagine telling a patient though that a change from a creatinine (a kidney function test) from 1.5 to 1.8 is highly critical but a change in BUN (blood urea nitrogen – another kidney function test) from 20 to 28 is nothing to worry about. None of this makes any sense to people not educated in medicine or laboratory science. And all of this is fine until we start to try to draw patients into their own care and setting their own goals. Rather than telling folks that keeping all their values at 50 is the goal and that the safe range is from 40 to 60 for all values – we tell them to keep their HgbA1c (glycosylated hemoglobin – a test of diabetes control) below 7.0, their LDL (low density lipoprotein or “bad cholesterol”) below 130 (or 100 if they are diabetic), their HDL (high density lipoprotein or “good cholesterol” ) above 45, their hematocrit (red blood count) above 35, and so on. Not only don’t the values make sense but their normal ranges are not standardized between tests nor between different labs running the same test using different methods.

What does all this mean.

We need to transfer health information back to patients – a job that will require a major transformation of the way we use medical language and even the units of measurement we use.

It is essential that we do this. A patient making six ½ hour visits each year to my office spends 3 hours out of 8760 or .03% of their life that year in my office. The rest of the time they need access to their health information to keep them informed of what they need to do and to keep them motivated to stay focused on the health care issues that are important to their continued well-being.

Health care providers have to relearn English and learn to translate their words and their measurements into terms that people can understand. Mary Sampson’s negative mammogram result was a positive finding for her but it could have been a lot more positive if she had known that negative was a good thing.

[i] Safran DG, Neuman, P, Schoen C, Prescription Drug Coverage and Seniors: Findings from a 2003 National Survey, Health Affairs Web Exclusive, 19 April 2005; W152-W166. Available at Health Affairs.org (accessed 6/8/05).

[ii] Lukoschek P, Fazzari M, Marantz P, “Patient and physician factors predict patients’ comprehension of health information, Patient Education Counseling, 50(2):201-210.

HIT and HIE for America’s Most Vulnerable Patients

2007-11-01T07:13:00.001-04:00

Today I will testify before the U.S. Congress, House of Representatives, Committee on Oversight and Government Reform, Subcommittee on Government Management, Organization and Procurement. The hearing, entitled “Too Many Cooks? Coordinating Federal and State Health IT” could go on for weeks if the issue were to be thoroughly explored. I was asked by the Subcommittee Chair, Edolphus Towns to present our experience with health information technology in community health centers and make some recommendations.

The rollout of HIT/HIE must include special considerations for vulnerable, diverse populations or run the risk that it will increase disparities in health services delivery and health outcomes. I will make the following recommendations at the hearing.

Insure that all legislation that supports the implementation of electronic health records targets those patients at highest risk on our society. This requires that all developments have organized ways for community participation in their planning and execution and that providers in the health care safety net – community health centers and public hospitals – are included as primary targets for funding implementation of health information technology

Insure that all legislation that supports health information exchange (HIE) includes provisions that safety-net providers – specifically community health centers and public hospitals – must be included in HIE networks. This requires that they first be given the resources to implement electronic health records (because you need an electronic health record in order to participate in a health information exchange). This also requires specific funding for implementation and maintenance of connectivity to HIE networks for safety net providers who may otherwise be unable to pay for the needed interfaces of their systems with these networks

Fund the integration of all EHRs, but specifically those in safety net facilities, into local, regional and state health department systems that monitor the disease burden in the community and help people optimize their preventive health care measures. Medically vulnerable populations are often the first victims of infectious diseases as they also suffer from inadequate nutrition, housing, clothing, health education and access to medical care.

Mandate that all EHR systems capture data on race, ethnicity, gender and primary language so that providers can examine disparities that exist in treatment and in outcomes within their health care delivery systems and work to correct them through targeted efforts aimed at the highest risk populations

Encourage EHR vendors to provide a mechanism for alerting providers to clinical trials which may be relevant to their patients. People of color are underrepresented in many clinical trials in this country and EHRs provide an easy way to identify patients who meet clinical trial criteria so that they may be offered the opportunity to participate. This improves the relevance of clinical findings of these studies to ethnically diverse populations.

Create criteria for EHR certification that require that information produced for patient consumption such as health education materials, visit summaries, portals that allow patients internet access to their own health information – all be made available in multiple languages and at a 4^th grade literacy level when needed.

Insure that rural areas are funded to deploy broadband technology and that broadband access is provided in all public housing being built. A timetable should be set to retrofit all existing public housing facilities with broadband capability.

Require the input of communities of color in planning the privacy and security requirements for health information exchange and in developing consent procedures for participation in health information exchange. There are well documented, legitimate reasons that issues of privacy, security and consent procedures will play out differently in communities of color. Among other issues, it must be made clear that information provided by patients and entered in their electronic health records as well as information shared in health information exchange networks is not subject to government use for purposes of identifying undocumented immigrants.

Provide resources for health information technology adoption in prisons, in the foster care system, for homeless health care providers, for migrant health care providers and for other providers serving vulnerable populations so that these mobile and transient patients can have records that are available wherever they may go.

Create a national system for specifically monitoring the impact of health information technology and health information exchange efforts on vulnerable populations and tying future funding to successes in eliminating disparities in treatment by the participating health care providers and disparities in the outcomes of their patients.

Insure that any pay-for-performance systems include mechanisms for risk adjustment for outcome evaluations – not to reduce the goals that we must reach but to recognize the added difficulty that traditionally medically underserved people may have in achieving these goals.

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I look forward to suggestions and enhancements to the items cited above.

Who will Represent America’s Poor as We Move Toward Health Reform?

2009-04-29T09:54:00.004-04:00

Both the Administration and the Congress have been gearing up for health reform for many months. There are some good signs that both branches of government are taking health reform seriously. The President has spoken out on many occasions on the need for health care reform which includes a transition toward electronic health records on an accelerated timeline. Congressional committees have held a number of hearings and discussions. But the voices of our most underserved populations and those who serve them directly have largely been absent. This must change because poor people in our country, the uninsured, and people of color are sicker and die disproportionately because of lack of access to care and differences in the quality of care when it is given. Many in our most vulnerable communities use the emergency room as their only source of primary care because they have no health insurance, speak languages other than English or lack access to adequate preventive and primary care services.

As a result, those most at risk experience poorer health outcomes for almost every chronic condition studied and for most surgical procedures. This is the definition of health disparities and why our nation experiences the high cost of treating them. As our nation becomes even more of an ethnic melting pot, these disparities will only get worse if we don’t get health reform right this time around. By 2050 nearly one in two Americans will be persons of color – folks who experience higher levels of chronic disease, shorter life spans, less health insurance and generally poorer health due to lower participation in health insurance plans and less access to care.

But where are these voices in the current health care debate? Both the Administration and the Congress hear regularly from a chorus of organized representatives from the health care industry as they should. But the voices of those most affected by health disparities and the voices of those providers, hospitals and insurers who are most knowledgeable and most involved in their care are largely missing from the current national debate. A recent Senate panel on health care reform included some of the most distinguished names in the health care community. Unfortunately these panels did not include a single representative from underserved communities or those who serve them. If we are to truly reform health care in this nation, this must change.

This Administration and our Congress must enact measures that implement coverage and access for those who cannot now afford health coverage while paying attention to the worsening shortage of primary care providers in our nation’s poorest urban and rural communities. The use of electronic health records and health information technology must also focus on the maximizing the affects of these changes in underserved communities.

As the Administration and the Congress move toward health reform, they must widen the net of the communities and their representatives to whom they are talking. In the establishment of the Health Information Technology Committee of the Department of Health and Human Services, a designated seat was established for "An expert in the health of vulnerable populations". I am pleased to have been appointed by the Administration to that position and look forward to input from my colleagues from a broad spectrum of safety net provider organizations and from community and faith-based organizations to help bring the voice of America's most medically underserved folks into the critical discussions concerning the widespread deployment of HIT. What an exciting time this is and what a great responsibility we have to get it right!

In Memory of Steven B. Tamarin MD - a Great Physician and a Great Friend

2008-12-01T12:00:00.001-05:00

I am deeply saddened to relay to you news of the death of Steven B Tamarin MD, a personal friend, a great physician and one of the founders of Family Medicine in New York City. Steve died unexpectedly in his sleep while visiting his cousin in Massachusetts. His loss is a tragedy for all who knew him and loved him as I did. While others sought his advice as their physician, I was the beneficiary of decades of close friendship with this incredible person. Steve could sit quietly and with uncanny attentiveness when you broached him with a personal problem as a friend. His listening skills were impeccable. Yet he spoke out vociferously about issues that moved him.

Steve was an outspoken advocate for women’s rights, an ardent supporter of the Tipitapa project in Nicaragua where he visited and worked many times over the years – as well as being one of the smartest and most dedicated physicians I have ever met. He read medical journals like they were novels that he couldn’t put down – enthralled at every new study that provided insight into the workings of the human body in health and disease. One could not spend even a single dinner with Steve without him being called on his cell phone by his patients – many of whom he had cared for over decades. His patients adored him and many travelled great distances to see him after moving away from the Upper West Side where he practiced. Steve always ran late and appointments meant little to him. He was dedicated to enjoying every patient encounter himself and gave his patients whatever time they needed to share their concerns with him.

Over a decade ago Steve became a member of the Institute for Family Health's Board of Directors and as the only physician on our Board, was depended upon to challenge our clinical protocols when needed and provide advice on issues of medical controversy. He was also a past president of the New York State Academy of Family Physicians – a position he held with distinction and one of which he was most proud. He continued to be involved in the Academy on a local level, bringing politically important issues to the forefront at all times.

Steve's own spirit was sustained by music. I was often the beneficiary of his incredible music collection as he burned compilations of his favorite blues songs for me on CDs and would share his eclectic musical selections proudly. While we were both on the Board of the New York State Academy of Family Physicians we took dozens of trips by car to Binghampton NY where their headquarters was located and braved many a snowstorm together across Route 17. We both loved those trips, brought CDs from our collections and sang out loud half way across NY State. I am sure that all who were close to him have their own stories of settings where Steve was so outwardly exuberant that an unknowing observer would think him insane.

One special evening he invited me to hear a particular Cuban pianist about whom Steve had encyclopedic knowledge and about whom I knew nothing. We went to a very classy jazz club somewhere in Manhattan where people were dressed to kill and where the staff were dressed in tuxedos. We were seated a few rows from the piano which was lit romantically and the crowd applauded enthusiastically after a long wait when the performer entered the spotlight. Steve could hardly contain his enthusiasm. As the first number began the crowd fell silent. Not 30 seconds into the first piece Steve could no longer contain himself. He was so excited he jumped out of his seat, threw his arms in the air and yelled "you go man! - play that thing!" While the crowd was appalled, the pianist nodded his head and smiled at Steve - obviously flattered and embarrassed. I recovered a few minutes later and crawled out from under the table.

I can't get the picture of Steve skiing out of my mind. We spent many a winter weekend at his parent's home in the Berkshires where we would sneak away to Brody Mountain during the day to ski. Steve had the best snowplow I had ever seen. Not to be mistaken for a real skier he always wore a long winter coat that went down to his knees and would snowplow down the steepest slopes at breathtaking speed his arm waving his ski poles wildly in the air and often yelling enthusiastically about what a fantastic day it was. In the evenings we would sit by his parent's twenty foot high fireplace in their Berkshire get-away and play guitar together - or debate the implications of the latest medical findings. It is time that I will always cherish.

Steve was one of the first of the new generation of Family Physicians in Manhattan. Along with the late John Falencki, they forged the path that many of us followed. We are forever indebted to them for their foresight and courage.

Steve will be sorely missed by his family, his patients, his friends and his colleagues. Whenever we parted - whether I was driving him home from a Board meeting or after spending the New Years weekend we would hug. Either he or I would say "I love you, man." and the other would reply, "I love you too." Life doesn't bring us many friends like that.

I am heartbroken to lose him.

Teaching kids how to save lives... Subtitle: Does anyone remember what the principle export product is of Austria?

2007-10-25T16:59:00.000-04:00

It was miserable last night - one of those foggy, drizzly nights when all I want to do is curl up in front of the fireplace with the family. But my schedule had me running from a cocktail party on 5th avenue honoring one of the true heroes of the public hospital system in NYC - LaRay Brown - to Marina Del Rey in the Bronx where Mt. Hope Housing Corporation was honoring Congressman Jose Serrano and State Senator Jose Marco Serrano Jr. I was 2 hours late and dinner had been served already. My table was all the way in the back and since I was quite late I walked right up to the front table where Jose Serrano was seated and kneeled down beside him. Not two minutes later Shaun Belle, President of Mt Hope housing grabbed me suddenly by the arm and pointed me to a woman at the next table over who was choking. The woman, formally dressed in her 30s was standing, grabbing her throat and a man behind her was trying to administer a Heimlich maneuver. He was unsuccessful. As I approached he moved away and I could easily see that the woman had an airway that was completely obstructed. She was struggling to breathe and tears were running down her cheeks. It took three tries for me to clear her obstruction with a properly (I guess) administered Heimlich.

So I went home and talked to my son Conor - 15 years old. Told him the story and watched him doing an English project. He was fascinated and surprised when I explained to him what happened. He had learned the exports of all the major countries in the world (who cares?), could name the capital of every state in the US (who cares?) but wasn't (and won't) be taught a simple technique that could, some day, help him save a life. Neither has he - or my other boys who are older - been taught anything about health (except for watching those old movies about "venereal disease") or the major diseases that effect Americans.

Today we sit in the center of epidemics of diseases that are related to health behaviors - what we eat, how we exercise (or don't as the case may be), how we use (or abuse ) substances such as alcohol and tobacco and medications. Shouldn't every child learn as much about their bodies as they learn about the planets? As much about maintaining healthy behaviors as about religion? As much about first aid and the many ways they can help in an emergency as about baseball or football?

The woman whose life I saved last night was lucky that a doctor was nearby. None of the other dozens of people who surrounded her knew what to do. Those that tried to help her failed because they were doing the Heimlich maneuver the wrong way. A tragedy was averted. But by too close a margin. If the traffic had been just a bit slower, if I had stopped for gas when the warning light went on on my dashboard, or sat at my table at the back of the banquet hall - the outcome might have been very different.

If we taught people in school adequately about first aid, health and disease, preventive care of themselves and their families - there might have been twenty other chances for her life to have been saved. Instead she was saved by good fortune and, perhaps, some intervention from above.

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After the comment posted by Dr Eric Gayle below of the Institute for Family Health, I have added the following information on the Heimlich Maneuver - figures are from http://health.allrefer.com website. Learn these techniques and you may have the chance to save a life.

Figure 1. For Infants

Figure 2. For Children

Figure 3. For adults

Figure 4. You can also do a Heimlich Maneuver on yourself if you have some food lodged in your windpipe.

"Community-Based Participatory Research"- Abe Lincoln Style

2007-12-03T21:39:00.000-05:00

“Of the people, by the people and for the people”

Nothing in the world of research can be as challenging as engaging in community- based participatory research (CBPR). Our staff at the Institute for Family Health has been engaged in CBPR for almost a decade in the Bronx. We have encountered many challenges, but also have benefited from relationships that have extended well beyond our initial research objectives in a community with extensive needs - but also one with tremendous assets.

As a framework for thinking about CBPR, I will borrow a phrase from President Abraham Lincoln’s 1863 Gettysburg address as a way of organizing a vast set of critical concepts that researchers need to consider. Lincoln talked about a government of the people, by the people and for the people. He might just as well have been talking about CBPR.

Of the People

CBPR principles require a major reframing of the way that we think about research. Often times the most difficult aspect of beginning any research endeavor is framing the research question. The research question, in turn, suggests different research methods, statistical methods and resource needs.

If we are committed to CBPR however, the conceptualization of a research question takes on new meaning and new complications. The research question needs to emanate from the community we are working with. Mistakes in this phase of research development can send researchers off track for the entire duration of a project. Let me cite an example.

A researcher is interested in investigating why there are so many hospital admissions being made by children with asthma in the community. She hypothesizes that understanding medication and medication adherence is a major issue, and designs a project to test different methods of educating children and families about asthma. Linking up with a number of community-based organizations (CBOs) in the area she explains why this question is important and how she plans to investigate the topic. She presents background information to community residents to get their buy-in and encourage their involvement.

There is a disconnect, however. The community has different ideas about asthma. They are concerned that the epicenter of the epidemic in their community is the area where produce trucks wait to unload their wares, sitting for long periods, idling their engines and running their refrigeration units. The community members are also concerned because a large number of children in the community lack health insurance and cannot afford the expensive medications that are being prescribed for them. To add to their problems, the community hospital’s census is falling, so children are being more readily admitted for short hospital stays. In short, community residents conceptualize the asthma hospitalization problem completely differently than the researcher, and want help researching the issues they have identified. Moreover, they want help solving the problems they have deduced from their observations.

So our well intentioned researcher goes into the community to engage in research that is neither based upon the observations of the community, nor addresses the most critical issues as identified by them. What is a researcher to do?

CBPR of the people must start with research questions that are framed by the community, and are based upon the priorities they establish. In the example above, the community wants to know are if there is any evidence in the literature or that can be developed through a research grant - that would support or refute their observations. Does trucking exhaust increase the prevalence of asthma in the community? Does it exacerbate asthma attacks? Are the hospitals admitting more patients now than they did when their beds were full? How can parents know when hospital admission is appropriate for their children with asthma?

CBPR of the people, therefore, must start both temporally and organizationally prior to framing a specific research question. It must grow from the priorities of the community.

When the Institute began its work on health care disparities in the Bronx, we had observed that our 15 year effort to build primary care centers in the community and train primary care doctors to work there had not changed the health statistics in the community. These observations were coupled with observations about disparities in care in Bronx hospitals that we were interested in investigating and addressing.

We were not newcomers to the community. A decade before we had begun efforts to work with CBOs to identify areas of the Bronx where primary health care services were desperately needed, and to work with those CBOs to develop the services that they felt would best address those needs. We decided to start this research process by contacting a few of the key individuals we had worked with previously. They invited others they knew to the table, and together we discussed the problems of the health statistics we had put together. We also put together a visual presentation of the findings of medical and health services research studies, one study to a slide, with the results expressed in simple, non-scientific language. We presented a selection of the many studies in the literature that described the disparities in health care and in health outcomes between people of color and whites.

The result of this preliminary inquiry was a decision to run focus groups in the community – 10 in all – and show the disparities slides to the community. The focus group participants were asked to share their experiences with the health care system and to discuss their ideas as to the root causes of these disparities. What emerged was the outline for a research and action agenda that would never have been conceived through more traditional methods.

In summary then, CBPR of the people starts with a definition of the problem that flows from the community’s priorities and from the causality hypotheses the community has about those problems.

By the People

CBPR, like other partnerships, requires that value be brought to all the people and entities involved. Maximizing the opportunities for community residents and community leaders to play significant roles in research is critical to making sure that the research is done by the people to the maximum extent possible. This brings multiple benefits to the collaboration.

First it strengthens the resources in the community building capacity for future research efforts.

Second, it builds trust among community residents. Grant funds are distributed to community agencies and individuals, contributing to their economic strength and demonstrating through action rather than words, that this is truly a shared effort.

Third, community residents have access to places that academic researchers have difficulty engaging. Engaging faith organizations and community based organizations in survey research or focus groups is best done through the existing involvement that community residents have with those organizations.

There are many roles that community members can play in a CBPR project. All of these help bridge the gap between academia and the community. In the project design phase for example, community residents can name and brand the project, identify community based organizations to participate, review the design of consent forms , interview proposed program staff and perform other functions. In the project implementation phase they can recruit participants, run focus groups and field community surveys. When the data has been generated they can review focus group tapes and code them, help to interpret the results, plan next steps for the research program and present the findings in community based as well as academic settings.

For the People

Perhaps the most critical aspect of CBPR is the notion that the entire project is being done for the people. It is critical that this is reflected in our actions, not just in our words. Our own focus group research confirmed what published studies have shown many times – that people in ethnic minority groups have a lack of trust in the health care system. Those that distrust the healthcare system are unlikely to trust that their best interests will be protected in any clinical trials in which they might participate.

As if Tuskegee wasn’t enough to scare people of color away from “research,” evidence of disparate treatment in the healthcare system, as well as enormous and ubiquitous disparities in health outcomes are frequently cited in both the medical and lay literature. The Institute of Medicine report on health care disparities received widespread news coverage, as has their report that hundreds of thousands of Americans lose their lives every year due to medical errors.

In addition to the above, communities are cognizant of the fact that academic medical centers, which are the focal point for a large portion of NIH research dollars, often sit in inner-city areas but frequently have had minimal contact with people and organizations in their surrounding community. In fact, some have become demonstrable examples of inequality in treatment.

Some run clinics that serve as training facilities for students and residents. Most have at least two standards of care – one for “private” patients and one for “clinic” patients – often called “teaching cases”. More and more of them are developing “boutique” units where the wealthy can get special treatment, further creating inequalities within their delivery systems.

To people in the community - the health research enterprise is indistinguishable from other parts of the health care system, so as we step out into the community we do not come from a neutral place. This is especially true in low-income areas and in communities of color, where the health care system has long neglected the community’s concerns about access to care, and where many people get less than optimal care. We must recognize that we must start by climbing out of a deep hole of distrust. In these communities, researchers must make extraordinary efforts to ensure that they are offering benefit to the community and not merely locating their research activity there.

One way we can do this is by examining how patients are recruited for clinical trials. We must recognize that patients often participate in clinical trials in order to gain access to care that would otherwise be unavailable or unaffordable to them. This is especially true of the uninsured. Without insurance, gaining access to clinical trials may be the only way to get care of any kind. How can we use this as an opportunity to build trust? We need to focus on the fact that we are there to engage in research for the people. We need to be committed to making sure that anyone we interview for possible participation in our clinical trials gets treated – whether in or out of our trials. One way to do this is to develop a set of referral resources for patients who do not meet trial criteria so that they may also receive their needed care. This demonstrates to the community that we are there to help people – not merely to engage in our research activities.

Another important aspect of doing research for the people is making sure that our commitment to our community partners extends beyond the publication of our research findings. The community needs us to help them fix the problems that we identify. Community based participatory research always requires follow-up- whether it identifies problems or highlights opportunities to remediate them. For example, our work with the REACH 2010 program funded by the CDC revealed a tremendous information gap between community residents and the health care system. Residents had many misunderstanding about how to access the system, their rights within the system, and how to advocate for themselves when they are not satisfied with the treatment that they receive. It would have violated our beliefs in CBPR, and compromised our relationships with our community partners, to have learned this and failed to commit ourselves to helping to solve this problem. Therefore we worked with our community partners to obtain both State and private funding to provide educational programs in partnership with faith-based institutions and community-based organizations.

In addition, the voices of professionals alongside theirs validates what community members have known for years, and gives them a sense of hope – that they are finally being heard by someone “inside” they system. It also adds credibility to their claims in the public sector where legislation and regulations are made.

In short, we constantly have to put ourselves in the shoes of those we are serving – the people in the community – to partner to solve the problems we identify.

CONCLUSIONS

CBPR which is of the people, by the people and for the people is the only type of research we should be doing in communities which have been historically underserved by the medical care system, and which are, as a result, most vulnerable medically. Any other approach to engaging the community in research is exploitive and fosters the inequity and distrust that we must seek to eliminate.

CBPR done well is a most rewarding experience, building trust by earning it, building relationships with people who we might never have encountered otherwise, and leaving a positive footprint where we have tread.

HIT before HIE (and not without my knowing what’s out there about ME)

2007-11-18T23:06:00.000-05:00

There is a grand vision out there in the world of health information technology. It goes something like this.

One day, sometime in the future, every time I encounter the health care system, the details of that encounter will be recorded on a computer. This includes everything a health care provider writes (er… types) about me in their electronic health record system (EHR), every laboratory, x-ray or other diagnostic test result, every prescription ever given to me and information from the pharmacy on whether I got it filled and refilled. All of these computers will be connected through RHIOs (regional health information organizations) and all the RHIOs will be connected in some manner to the National Health Information Network (NHIN). The end result will be that anywhere in the country that I seek health care, with my permission, my treating provider will be able to search this network, find all the information stored about me, have this information consolidated and organized into a useful format and then use this information to help plan my treatment. The promise is that this will have dramatic effects on the quality of care I receive and the overall cost of medical care in this country will decrease.

This vision is driving an enormous national effort to set standards for how these computers will “talk” to one another, to establish rules for the privacy and security of the information and to figure out the path to bring this dream into reality.

The vision is grand and I am sure will be realized some day. But there is a problem. There is a problem in focusing our efforts on connectivity, interoperability and exchange of information when the vast majority of that information is not electronic today. There is a problem in investing in a technology and an idea on a national scale without a substantial portfolio of regional and statewide efforts to build upon. But most importantly, we are overlooking many, less expensive and better proven methods of improving the quality and safety of medical care in the United States. The dream of a National Health Information Network (NHIN) is worthy of attention but it is a dream we should put off for another night.

Health information technology in the hands of health care providers has great potential to improve quality, improve safety and improve communication with patients. With limited funds available for technology development, we should be spending the vast majority of our IT resources now in supporting the implementation of health information technology (HIT) rather than the future vision of widespread health information exchange (HIE).

It is estimated that the increased hospital costs alone of preventable adverse drug events affecting inpatients are about $2 billion for the nation as a whole. The table below is referenced in the IOM report To Err is Human and seeks to create a taxonomy of medical errors. This is useful in examining which, if any of these errors would be alleviated by health information exchange. Conclusion: very few of them would be affected beneficially. Which of them would be improved by health information technology implemented in the provider sites? Almost all of them.

HIT before HIE

Here are just some of the reasons why we should put our resources into HIT, before HIE

Electronic access to an individual’s health information from another provider’s EHR system will not address the major ways in which they are likely to be injured by the health care system
Almost all documented quality improvements and safety enhancements through health information technology have come from the use of HIT systems within an organization
There are no operational studies which demonstrate a reduction in health care costs through health information exchange – the often quoted models are based on dozens of unproven assumptions
With the low prevalence of electronic health records and no mandate for providers to make this transition, many providers will continue to have records that are not plugged into a data exchange. The result is that not everyone who wants or needs their record in the NHIN will have it there if their provider is not connected.
With incomplete information, much of the information contained in the NHIN (or another data exchange model) will be incomplete and will not reflect the patient’s current status
There is no way for a treating provider to validate the quality of the information provided by other treating entities. Without validation it is possible that inaccurate information is passed from one source to another without critical examination of its validity.
Duplication of some studies – x-rays over time, serial lab tests and others – may in fact be optimal medical care. Assumptions have been made that this duplication is expensive and will be largely eliminated when all information is available on the NHIN.
Doctors who make money by doing tests may perform duplicate tests even if prior information is available, questioning the validity, timeliness or quality of prior testing.
Pharmacy data retrieved will tell providers what was prescribed, maybe even tell what was filled at a pharmacy, but cannot tell what medications the patient had stopped by another provider or whether the patient is actually taking the medication. It also won’t tell if the patient has started using old medications around their house or meds from a family member or friend. Nothing substitutes for reviewing a patient’s medications and having them bring the ones they are taking for review by the treating provider.
Current technology cannot provide absolute privacy and security and people need to be convinced that when their privacy and security risks are balanced against the potential benefits of having their health information on the NHIN, that the latter is seen to be dominant. There is survey data to indicate that many patients will voluntarily agree to release their information to their local data exchange and thus, become part of the NHIN. There is reasonable evidence however that patients will not want to have any information about them shared without having access to that information themselves. (“Nothing about me, without me”)
There are no studies that have looked at the errors that might arise during the decades that it may take for this ultimate vision to be realized – during which time information on patients opting in to the data exchange will be largely incomplete, and thus inaccurate
While some estimates have been made of the costs that will be added to each clinical encounter through maintaining, querying and contributing to the NHIN there are no proven business models for sustaining these costs going forward. Health care costs in this country are already higher than anywhere else in the world and we have not yet dealt with the costs of health information technology and health information exchange.

Getting to widespread adoption of HIT and then HIE

Problems notwithstanding, the ultimate vision of the NHIN is the right one. The path we have set to achieve it is wrong. We are funding HIE projects for implementation when there are not standards in place for how privacy and security will be managed. Current certification (by CCHIT) of EHRs does not require that interoperability standards have been met. We are funding a weed garden of RHIOs, each exchanging different sets of information, each with different participation agreements, different platforms, different methods of patient identification and not all using the same interoperability standards. Some providers, because of either functional or geographic overlap, are involved in two, three or more RHIOs. While this may make sense today, ultimately it is wasted effort and will surely not make sense in the future. I think the logical rollout of HIT and HIE should look more like what follows:

First Order Priorities

The vast majority of development resources at this time should be directed to health information technology (HIT) implementation in all locations and a timeline should be set for providers to be required to have installed a fully functional EHR that meets the certification requirements of CCHIT (the Certification Commission for Health Information Technology)
Priority funding should be given to demonstrations of improvements in quality and safety using HIT within hospital and ambulatory care systems with rapid dissemination of models that work
A certification program like the one being developed by the National Committee for Quality Assurance (NCQA) should be implemented immediately to set the goals for HIT adoption and use. This certification should be used to establish a fee enhancement that all insurers (public and private) would pay and which could be used by providers to support improved quality of care

Second Order Priorities

CCHIT criteria should include requirements for a patient portal so that patients are able to have access to all of their health care information. This is an important precursor for the implementation of full information exchange. People need to know what information is in their electronic health files, have the opportunity to validate this information and feel secure that the information is secure
Priority should be given for connectivity of EHRs to a public health syndromic surveillance system. With fears about an influenza pandemic raising year by year, such connectivity could provide life-saving early warning enabling an increased lead time for dispensing immunizations and anti-viral medications.
Standards for interoperability must be developed and vendors should all be required to adopt these to become CCHIT certified

Third Order Priorities

Once a national framework has been developed for privacy, security and interoperability standards and appropriate legislation is in place the NHIN should be implemented through the vendor community. Each vendor would serve as a node in the NHIN, implementing the privacy, security and interoperability standards and linking their users into the national framework. This would completely alleviate the RHIO madness that we are in and the costs of connectivity would be borne by the provider community to be reimbursed through national requirements for private insurers to pay for connectivity. Hopefully, when HIT is completely implemented and the NHIN is a reality, the overall cost savings in reduced hospitalization, reduced medical errors and increased patient safety should offset the costs of the technology and may stabilize or even reduce health care costs overall.

This model makes logical sense to me. It has significant advantages over the obsession we seem to be witnessing with adopting interoperability today. We need to refocus our efforts and our funding on widespread adoption of health information technology today and leave the promise of a web of connectivity until tomorrow.

Community Health Centers in the Service of Public Health

2007-11-04T16:55:00.000-05:00

For too many years public health departments and community health centers have lived in their own worlds, with public health focused on geographically and politically designated populations while community health focused on the delivery of primary health care services.

In 2002, when the Institute for Family Health went live with the EPIC electronic health record and practice management system one of our first major projects was to link with the New York City Department of Health and Mental Hygiene to eliminate these silos and to explore the many ways that our work was complementary. What has resulted is a significant array of joint projects that was honored with this year with receipt of the 2007 Davies Award in the category of Public Health from HIMSS. A few of the figures from our application are posted below. We are very committed to using the electronic health record to link our community health center network to the important work of our health department in monitoring and improving the care of all New Yorkers. (You can double-click on any of the figures to enlarge them for easier reading).

Figure 1
The New York City Department of Health and Mental Hygiene collects data from a variety of sources for its Syndromic Surveillance System including ER data, 911 data, absentee data, and pharmacy data. In this figure, the results of their ER data collection are compared to data they receive from our EHR using fever and respiratory symptoms as the trigger. It can be seen that the Institute's EHR data peaks days before the ER data when Flu A is prevalent and is much more responsive than the ER data in showing the less serious flu B outbreak that appears later in the year.

Figure 2
This figure represents the bilateral transfer of information between the NYCDOHMH and the Institute for Family Health. When the NYCDOHMH receives a signal from any source of an outbreak they immediately issue a bulletin via email to all NYC providers. That notice is picked up by our Chief Medical Information Officer and if appropriate an alert is programmed immediately into our EHR. This alert may ask that Insititute providers collect specimens for the DOH for further investigation.

Figure 3
In September of 2007 the DOH reported an outbreak of Legionairres' Disease in the Parkchester neighborhood in the Bronx. Alerts were immediately put in the system such that when a patient presents in either of the two centers we operate in Parkchester, and has a chief complaint of cough the provider receives a message to consider Legionella as a possible diagnosis.

Figure 4
The alert is coupled with a Smart Set of possible notes and orders to facilitate the proper response by the provider

Figure 5
In another shared activity with NYCDOHMH the Institute has begun tracking outcomes on over 40 indicators which are related to the City's "Take Care New York" program. In the example below we track the percent of patients (Men > 35, Women > 45) who have met criteria for cholesterol testing.

Figure 6
In this figure we are tracking the progress that results from an alert to nurses and providers to update the substance abuse history portion of the EHR. One can see that compliance was quite poor to begin with but has steadily increased at all sites.

Additional joint projects include

producing a series of algorithms for decision supports that are generic and will be in the public domain and are specific to primary care practice
a bilateral interface with the immunization registry
automated reporting of communicable diseases
development of a "model" EHR for public health

New York City Public Hospitals drop managed care plans. Alligning patient interests with financial incentives is key.

2007-10-28T15:02:00.000-04:00

Early in the week I heard from some of our staff physicians that the New York City Health and Hospitals Corporation (NYCHHC) had decided to drop all of its Medicaid, Child Health Plus and Family Health Plus programs - save three - Metroplus (owned by HHC), Healthfirst (owned by a consortium of hospitals) and HIP (which covers many hospital workers). Within the first week our community health centers were getting calls from people who had other health care plans but who used NYCHHC facilities as their primary care provider. They were scrambling around for a new primary care provider - not an easy task with the shortage of primary care providers that exists today in our city and throughout the country.

I am sure the motivation behind this came from the recognition that managed care is dependent on a sophisticated primary care delivery system and is supposed to focus on prevention, keeping people healthier and keeping them out of the hospital. Since NYCHHC "owns" their primary care delivery system then keeping people healthier and out of the hospital cuts into their inpatient revenue and actually does harm to the economics of the entire system. Any money saved is saved by the insurer and is of no benefit to the hospital or the primary care providers.

There is one critical exception - and that is if NYCHHC also owns or has stake in the insurer. In that case, saving money on hospitalization reduces their inpatient revenue but at the same time increases profits to the managed care company that they own. So if you own the hospital and the primary care system you must also own or have stake in the insurer or better care means less revenue.

So NYCHHC I suppose is gambling that patients, hearing about the drop of the formerly affiliated health plans in which they have no financial stake - will find another health plan that NYCHHC participates with and will join that plan to keep their doctor. But managed care plans don't like to lose members and while this is happening they are contacting their members who have primary care providers at HHC facilitites and encouraging them to switch to another provider for their primary care. This will cause the physician - patient relationships in many families to be disrupted severely and will surely increase health care costs in the short run as well as threaten the quality of care those members recieve.

**Please click "comment" below for a very articulate explanation of this issue written by Al Aviles, President of the New York City Health and Hospitals Corporation.**