Integrating Behavioral Health Care, Social Work and Primary Care

There is no question that there is an enormous push now for what is being called Value Based Purchasing of health care services.  In a sentence, payers would like to pay providers for achieving certain outcomes related to reducing the overall cost of care, while keeping people healthy by improving their care.  It is a worthy goal.

As primary care physicians have struggled to move in this direction they have encountered two major obstacles.  The first is that many patients with the poorest health and the highest health care costs have behavioral health and/or substance abuse problems.  The second is that social factors, long considered out of the purview of medical or mental health care, have emerged as major risk factors for ill health and extraordinarily high health care costs.  

So to prepare for the future, where payment will be based on cost and quality (together referred to as “value”), health systems must figure out a way to integrate care for behavioral health, social and substance use issues into their delivery models – either through providing those services on site, or through referral arrangements.

Many people now talk about integrating care and there are many organizations and providers trying to achieve this.  We often see this as the introduction of psychiatrists or other behavioral health providers into a primary care practice or the development of a referral relationship with good reporting back and forth between primary care and mental health. 

I have wondered what truly integrated care would look like.  You know, the kind where each specialist focuses on their own area of expertise but every person seeing the patient in the office is responsible for every aspect of their care and well being.  I believe an essential tool here is a fully integrated electronic health record – one which organizes progress notes chronologically irrespective of who the provider of care is that wrote the note or whether they are a primary care provider, behavioral health provider or a social worker trying to get housing for the patient.   Just as importantly however, is the requirement that every person touching the patient is working to help the whole patient and shares a common interest in all parts of the patient’s well being.

Let me cite an example of how I will know when we have achieved this level of integration. 

A 53-year-old patient with hypertension, diabetes and depression is seen bimonthly by her primary care physician and is being seen in every month by the Institute’s psychiatrist.  The psychiatrist reads his own prior note to recall the patient’s last visit to him and then proceeds to read the most recent primary care note as well.  He notes that the patient was started on a new hypertensive medication on the last visit.  He asks “I see Dr. Jones started you on a new medication for your blood pressure last visit.  How is it going?  Any problems with it?”

The patient answers, “As a matter of fact, I had to stop it after a few days because of a rash.  I guess I was allergic to it.”

“If you don’t mind, I’d like to check your blood pressure while you are here since it was a bit high on the last visit to Dr. Jones,” says the psychiatrist.

“Sure.  That would be great.”

As it turns out, the patient’s blood pressure is very high.

The psychiatrist then asks when the next appointment is scheduled with Dr. Jones.

“Not for another 6 weeks,” the patient replies.

“After our counseling session, I’d like you to see someone for your blood pressure before you leave.  Would that be OK?”

“I’d greatly appreciate that.”

At the end of her visit with Dr. Jones, he calls the nurse on the primary care team, explains the situation and the patient is put in with a physician on the team to adjust her medications.

Get it?

It’s not about people with different interests in the patient each sticking to their own domain.  It is about each member of the patient’s care system being concerned about the whole patient.   That’s the Holy Grail.  Now we just need to figure out how to get there.

Provider Accountability Meets Patient Choice

The health care system overall - and community health centers and family practices are no exception – have been constructed on a very paternalistic model.  We pretend we know what is best for our patients and make a system of comprehensive care that requires continuity, appointments to be kept, and patients to obey our orders for preventive care.  And we are increasing being evaluated and paid on our ability get our patients to comply with all of the preventive and chronic care imperatives that are determined to be today's best practices.

While we are evolving this system, patients are choosing to go to other models of care for urgent issues, camp physicals, immunizations, as well as for simple problems.  They seek problem focused, convenient, rapid throughput visits without being engaged in discussions driven by our advice about other issues and our response to EHR-driven reminders.  

We have to pay attention to what is happening now that new immediate care options are available more and more to our patients and we have to figure out where our comprehensive care model fits in.  I don’t have the answer to this yet but we have been talking about it a lot in our management team meetings.

Imagine that your life is in disorder and its three days before school starts, you forgot to get your child’s immunization updated and need a school physical form filled out.  Our health centers see this as a disruption in our appointment system and have difficulty  accommodating this type of visit in an efficient manner.  

Our patients, however,  can now go to any of a dozen local sources of immediate care and get this done.  I think we need to be able to figure out a way to keep our patients with us, while still allowing them to have a short visit if they need it, to accommodate their last-minute issues (haven’t we all had them at one time or another?) and still maintain them in our practice.   If we stick with our old model of requiring people to get care the way we think it should be done and remain oblivious to their chosen care model and the proliferation of places where they can get it respected, then we are truly in trouble.

The real issue now is that accountability for quality will still lie with their primary care provider team, yet our patients will have more and more choices for more convenient care in between their main chronic illness visits.  How we will adjust our practices to deal with that?

ACOs and Federally Qualified Health Centers: A Lost Opportunity to Transform the Health Care of America’s Most Needy?

As our Nation struggles with the troublesome duet of embarrassingly poor health outcomes and seemingly unstoppable escalations in health care costs, a model has emerged with promise to blaze our way out of this quagmire. And unlike many other advancements in medicine, the first beneficiaries of this model are America’s most needy residents. The model, the Federally Qualified Community Health Center, incorporates almost every aspect of what health care experts believe are the fundamental characteristics of an advanced model of health care organization. Strangely, unless action is taken immediately, that model will be overrun by the implementation of Accountable Care Organizations – or ACOs – when ACOs have been developed to accomplish many of the same goals. Here’s what is happening…..

The Medicare regulations for ACOs were released on March 31, 2011 in draft for public comment. In brief, ACOs are meant to establish a financing system where payment enhancements are made to the ACO, and then to the providers, based on achieving specific health care outcomes and reducing (or in some cases stopping the escalation of) health care costs. This is achieved by assigning patients to ACOs based on their historical place of care and assigning cost predictions based on their historical utilization of health services and other health-related characteristics. So everyone – or almost everyone – wants to be an ACO so they can get the financial rewards from their efforts to improve care for their patients and reduce overall health care costs. In New York City, hospitals, medical groups and FQHCs have been planning their ACO strategy since the legislation outlining the goal of ACOs was passed last year in the health reform bill. Yet to the shock of the FQHC community, they were determined, along with Rural Health Centers (RHCs) and some others, to be ineligible to sponsor an ACO.

The implications of this will have enormous, negative impact on the future of FQHCs. To understand this, one needs to envision the advanced model that FQHCs have been developing over the past decade. To start with, they are governed – not just advised – by a board of directors that is made up of a majority of the health centers users. They are built in the community, governed by the community and therefore, serve as a model of how health care providers must be responsive to the needs of those they care for. They have been early adopters of electronic medical records, have been achieving certification as Medical Homes at a blinding rate (the highest recognition a primary care provider can achieve today). They have expanded hours to expand access, provide multilingual care where appropriate, and often integrate chronic disease management, mental health and dental services in one location. They engage networks of specialists to care for their patients – even though 1/3 of the patients they serve nationally lack health insurance. In short, they are the model for what everyone in the U.S. needs. So what is the issue?

ACOs will control the flow of funds for improved care and reduced costs and to insure that the benefits of these added payments accrue to those who have invested in the formation of advanced delivery systems, they must be in a position to control the distribution of these funds. We have always said that a rational system of care is built around a strong foundation of primary care – the FQHC. With hospitals and multispecialty groups in control, the same power relationships that exist now will exist in the future and what is worse – the same model of care and the same catastrophic economic results. We cannot afford to let this happen. The main question at stake here is whether we want hospital controlled ACOs sitting at the center of these new models, struggling to make up for the falling volumes of high-cost services they provide by fighting over market share with other hospitals, whether we want multispecialty group practices at the center of the ACO model with their frequent overrepresentation of specialists and underrepresentation of primary care or whether we want primary care as the ACO’s core – providing a rationally constructed system where the training of primary care practitioners in preventive care, care coordination and chronic disease management provides the foundation for improving quality and reducing cost. We all know what we need to do!

The elimination of FQHCs from the list of eligible ACO sponsors seems to result from a technical issue but it is hard to imagine that a technical work-around could not have been developed by CMS before the release of the draft regulations. The technical problem is that FQHCs are required by CMS to bill Medicare differently than practitioners in private practices bill. FQHCs do not use HCPCS codes to indicate the type and level of procedure done and they do not indicate the specific doctor who saw the patient as the claim form has only a place to indicate the clinic provider number. Because of this historical method, CMS claims the inability to collect baseline data back 3 years as they propose to do and the inability to attribute care to an individual provider. But for those FQHCs that choose to sponsor an ACO, this data is retrievable through a review of the medical records that contain this information. For those on electronic health records, this data could be extracted electronically. For those whose records are still on paper, a sampling methodology could be developed. Claims could be reprocessed for qualifying Medicare patients – those that CMS tells the center might be a candidate for an ACO by virtue of the FQHC providing a plurality of visits to the individual patient. The reprocessing would not effect payment but merely provide the needed baseline data for these patients. I am sure there are other solutions as well – and they need to be developed now.

The country needs FQHC’s as the sponsor and integrator of ACOs – especially as more uninsured patients achieve coverage through health reform in the ensuing years. ACOs sponsored by FQHCs would be based in a system with the most sophisticated primary care delivered in a fashion that by its very nature treats patients in order to improve their health outcomes and reduce their costs of care. We need to advocate quickly and powerfully that FQHCs be included as potential leaders of ACOs, in a position to insure that the distribution of funds through the proposed shared savings models is done in a manner that preferentially supports primary care.

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

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.

Medical Apartheid In NYC Voluntary Hospitals

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.

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

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.

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[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.

"Community-Based Participatory Research"- Abe Lincoln Style

“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)

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.

HIT and HIE for America’s Most Vulnerable Patients

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.