Diabetes registries are powerful tools that give health care professionals the knowl- edge to vastly improve their care of patients with diabetesand the …
Roundtable Proceedings
Tarrytown, New York, November 16, 2005
Diabetes Registries
It was so
powerful to be able to show [the patient] the graphs that plot her lab function and to say, Look where you were
Diabetes
registries [provide] the knowledge to improve care of patients–and the information to help patients take better care of themselves
Introduction
The document you are looking at breaks new ground in more ways than one It is the first publication of the Hudson Center for Health Equity Quality Hcheq, a new organization based in New Yorks Hudson Valley, dedicated to broadening access to health care and developing information technologies that support clinical initiatives and high quality care for all people It is a report on the proceedings of the first roundtable discussion held by Hcheq–the first of what we hope will be many such events convened by Hcheq to bring experts together for a lively exchange of ideas about a particularly thorny health care issue The focus of the roundtable itself was, as far as we know, a first: While the use of chronic disease registries in various settings has been explored and discussed, their adoption by small, resource-strapped
independent practices in community settings has not been spotlighted Diabetes registries are powerful tools that give health care professionals the knowledge to vastly improve their care of patients with diabetes–and the information to help patients take better care of themselves Diabetes is one of the 21st centurys scourges, a chronic disease that demands action In the following pages, youll learn what our roundtable participants had to say about the enormous benefits that can accrue from the adoption of diabetes registries–as well as the frustrations that may crop up along the way We think youll find the information illuminating
2006 by Hudson Center for Health Equity Quality Hcheq All rights reserved
Georganne Chapin President and Founder Hudson Center for Health Equity Quality
A Culture of Improvement:
Registries vs EMRs
Its impossible to discuss registries without also discussing electronic medical records EMRs Because diabetes registries collect selected information that is also collected in EMRs, registries are sometimes included in EMR packages Yet many EMRs dont include a registry and cant aggregate subpopulations of patient data as registries do So, which
electronic records system should come first, the registry or the EMR? For some, this is a philosophical question, for others, a question of time and money Theres no easy answer Unless a doctor is practicing with an EMR, a registry always involves doing double work, argued Richard Baron, MD, president of Greenhouse Internists, PC, in Pennsylvania If a practice uses a traditional paper chart, he noted, someone has to enter the information again electronically in a registry But EMRs have a high price tag, whereas a bare-bones registry system such as C-DEMS or PECS can be obtained and implemented at lower cost Used alone, a registry can help providers focus on chronic care– and offer a good introduction to the benefits of electronic recordkeeping If you use a stand-alone registry product, noted Alan Silver, MD, medical officer of IPRO, the New York State Medicare Quality Improvement Organization, its just another step for the doctor to say, Wow, I can do this, so why cant I do other things, like put lab numbers or prescriptions directly into it? A registry can be eye-opening and lead to an EMR
Doctors and Diabetes Registries
At Hcheqs first Diabetes Registries Roundtable, speakers
and participants discussed and debated the challenges, obstacles and opportunities theyre facing
patients with diabetes–not just the compliant ones–and responding nimbly to their patients needs How can this be accomplished? Its not enough for health professionals to work harder; they need to work smarter Information is the key To give all of their diabetes patients the care they need when they need it, physicians and their health care teams need to identify their patients who have diabetes and to have all lab values and notes readily available To have a sense of how well they are doing in improving outcomes for their patients, health professionals need to have a way to look at their aggregate results To understand the quality of the care they are giving, relative to community and national standards, it helps to be able to compare overall results A diabetes registry is a powerful electronic information-gathering tool that can accomplish all of these goals The adoption and implementation of diabetes registries by small practices at the community level was the focus of a roundtable discussion recently sponsored by the Hudson Center for Health Equity Quality Hcheq Participants
shared their experiences and reported on registries that have been implemented across the country: a Californiabased IPA with more than 100 practitioners participating; a hospital-based physician group with 45 doctors in North Carolina; a Vermont collaborative of 25 medical sites established under the guidance of a not-for-profit quality improvement corporation; and a New York-based effort spearheaded by the New York Diabetes Coalition and a not-for-profit health plan
Diabetes is a serious and escalating problem in the United States today, taking a terrible toll in complications, disabilities and deaths According to the Centers for Disease Control and Prevention, nearly 21 million people in the US–or about 7 of the population–have diabetes, and it is now the nations sixth leading cause of death By far the most common form of diabetes is Type 2, and the key risk factors for developing Type 2 diabetes and suffering its myriad consequences are well known: obesity, physical inactivity, hypertension, elevated levels of LDL cholesterol and poor glycemic control In addition to the human cost, there is a huge economic burden: The direct medical cost of diabetes is estimated at more than
90 billion a year The experts know much of what needs to be done to control diabetes and its complications For patients, the standard prescription includes taking such steps as eating a balanced diet, getting regular exercise, lowering blood pressure, checking blood glucose levels, taking appropriate medications and not smoking The challenge for physicians is to ensure that they are successfully monitoring the health status of all their
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Registries: Will the Data Be Secure?
of Registry: When New York Citys Department of Health and Mental Hygiene initiated mandatory electronic reporting of HbA1c values by laboratories in January 2006, red flags were raised Would the information be safe from employers or insurers? To public health officials, the need was clear: Diabetes has reached epidemic proportions in New York City, affecting 9 of the adult population Officials stressed that results would be provided solely to patients and their medical providers, not to any other agencies or to life or health insurance companies People will be watching to see how the experiment plays out For individual providers, collecting such information on their own registries doesnt raise such issues
Physicians generally view an electronic registry as an extension of their patients medical records But when the data is housed off-site or if there is the potential for other physicians to view information from other practices, the issue is murkier Some doctors worry that both registries and EMRs raise questions about privacy and security, especially when sensitive diagnoses are involved The issues, said Dr Cyrus Jordan of VPQHC, are not technology so much as privacy, security, governance and the way health care is currently financed So a barrier is getting permission from patients Diabetes doesnt highlight this as much as AIDS or psychiatric information does
For all members of
the health team to work together with informed patients, everyone involved needs timely data
The Power of the Registry Disease registries have their origin in public health practice For decades, state and federal agencies have kept population-based records on immunization status, birth defects, exposure to toxins, and morbidity and mortality from cancer and other diseases in order to assess the magnitude of health problems and study trends In recent years, as primary care professionals have recognized the
need to improve care of chronic diseases, electronic registries have been adopted at the private practice level At their most basic, these registries are databases designed to provide health information, most of it diseasespecific, about both individual patients and groups of patients Much of the current discussion in health care circles about technological improvement revolves around the adoption of Electronic Medical Records EMRs or Electronic Health Records
EHRs, which allow physicians to keep all individual patient records electronically Registries contain individual patient information but also aggregate data pertaining to patient populations with particular chronic diseases While some EMRs include a registry function, not all do so Whats more, EMRs are expensive and can be difficult to implement see sidebar, page 1 Because EMRs have been slow to gain acceptance, registries can be testing grounds for electronic record-keeping and demonstrate their benefits through vastly improved health outcomes A well-designed registry can: Sort patients based on specific measures of their health status, such as blood pressure or HbA1c levels Generate lists of patients needing care Assess
health among defined populations Provide key information for patients and physicians at the point-of-care
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Overcoming Barriers
As with any innovation, registries face difficulties getting off the ground Here, some impediments and the ways people are finding to overcome them
Barriers
Inertia Its simply easier to do things the way they have always been done, even when the old system doesnt work as well as the new
Solutions
We tried to take away all the reasons someone would not move We paid for everything in 26 practices We brought in the computers, installed them, did the forms –GLASEROFF Once you go through the painful process of transitioning, you can do things more quickly, avoid medical errors [and you get] the professional rewards of better job performance and internal satisfaction –SILVER The work to create a registry is the work to create a database Thats like programming a computer once The big leap is paper to electronic –BARON We do the data entry for everyone else We became the charting entity for the practices — GLASEROFF Lets suppose the patient is seeing the nutritionist, who finds out that the patient is having trouble with his feet She is empowered
by our protocols to go ahead and make a referral to a podiatrist –KELLING
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Provide follow-up care reminders Help analyze a medical practices successes and lapses Facilitate interaction between patients and health professionals in support of patient self-management Registries are premised on the recognition that caring for patients with chronic illnesses requires that all members of the health team–doctors, nurses, physician assistants, office managers and other staff–work together with informed patients To do this, everyone involved needs timely data A registrys most powerful impact may be the way it allows practices to identify high-risk sub-populations and target their care with tailored self-care programs or specially timed visits With a registry in place, patients are less likely to fall victim to neglect or their own resistance to treatment Thus, registries not only can improve physician adherence to treatment guidelines but also
It can be difficult for doctors to appreciate the benefits of a diabetes registry until they actually experience one; this requires a leap of imagination that not everyone can make
Implementation of a registry requires what seems like an
intimidating skill set for everyone in the physicians office
Data entry is a huge burden for practices that are already pushed to their limits and find it hard to do one more thing
Physicians need to identify patients who need more care, such as a flu shot or eye exam, and make sure the patients get what they need
Registries In Action
The Hcheq roundtables four main presenters–Drs Glaseroff, Kelling, Jordan and Sullivan–discussed and debated the many differences in their use of registries, including size, scope, sponsoring organization, mission and more This chart draws from their comments regarding some of the essential features of diabetes registries
Speaker
Douglas Kelling, Jr, MD NorthEast Medical Center
Why we need it
No matter what toys you use, gigabytes, hardware, what it comes down to is: Am I taking care of the patient in the best fashion? A registry is often eye-opening to the doctor, who thinks hes doing better than he is Its not the patients who go from 7 to 65 that matter Its those who go from 9 to 7 or 11 to 8 We case-managed everyone over 9 until they were under 8 That group dropped after a year from 118 to 8something The most powerful part of a registry is
on the reporting side It allows practices to look at the populations they care for, find high-risk sub-populations who need extra care or follow-up and go after them proactively We cant continue to practice medicine as we have been–the cost is too much and the quality is not good enough But just having information isnt enough You have to reorganize workflow around it
Holding it back
The biggest challenge is inertia and resistance to change I cant tell you the number of doctors, hospital administrators, health care workers who come to me and say great, and then never follow through
Making it work
To adequately and properly take care of these patients, you need a comprehensive system that includes all members of the health care team, to make sure they dont fall through the cracks, whether through medications, diet, lifestyle Everything we have done has been customized by the users–the medical assistants who have to download the thing, the receptionists who have to prep the charts, the patients
Alan Glaseroff, MD Humboldt-Del Norte IPA
Almost none of the offices of Humboldt County had computers that were used for anything other than billing, and we were dealing with 26 practices
that all have their own way of doing things The problem is that most of the information a registry really needs is not digital Its on paper and conversational That is, with most chronic diseases, its all in the progress notes
Cyrus Jordan, MD, MPH Vermont Program for Quality in Health Care
Senior management support–whether its a registry or a peer model/care model–is critical Its got to be aligned with organizational, strategical, clinical and local leadership
Janet Jessie Sullivan, MD Hudson Health Plan
We have many competing hospitals and overlapping alliances My health plan cant do it for patients who arent enrolled in our health plan–its not even legal
The benefit of the registry has to accrue to an entity that can afford to sustain it Regional pay-for-performance pr 
ograms could work with each plan contributing for their own enrollees
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improve patient adherence to self-management programs and appropriate use of medications Ultimately, they can improve health outcomes In Humboldt County, California, outcomes for about 800 patients showed marked improvement during the first year that physicians used a diabetes registry, said Alan Glaseroff, MD, chief medical officer of
the Humboldt-Del Norte IPA and a presenter at the Hcheq roundtable The proportion of patients whose diabetes was poorly controlled HbA1c 9 fell to 69 from 77, and the proportion whose diabetes was well controlled HbA1c 7 rose to 55 from 52 The proportion of patients with LDL bad cholesterol levels below 100 rose to 44 from 32 In addition, the registry allowed participating physicians to do a better job of ordering tests for their diabetic patients Nephropathy assessments were done for 70 of patients by the end of the first year of registry use, up from 42 a year earlier, and rates for retinal exams and foot exams rose as well For doctors and patients alike, the payoff from being able to get quick results and evaluate them can be dramatic The HbA1c level of one patient of John
Jacoby, MD, of New Rochelle, a participant in the New York-based registry, was nearly halved between her first and second office visits, noted Janet N Sullivan, MD, Hudson Health Plans chief medical officer, at the Hcheq roundtable [Dr Jacoby said that] it was so powerful to be able to show her the graphs that plot her lab function, and to say, Look where you were A registry can also send health care
professionals a powerful message At NorthEast Medical Center in Concord, North Carolina, for example, doctors receive a report card every six months that shows how their patients with diabetes have fared based on measures such as HbA1c and LDL cholesterol levels They also see the aggregate data in their reports posted in the doctors lounge in the spirit of friendly competition, said NorthEasts Dr Douglas Kelling, Jr, another roundtable participant Overcoming Barriers Despite their enthusiasm for registries, roundtable participants noted numerous challenges to their sustainability For one thing, successful adoption of a registry requires a change in mindset and a profound rethinking of just how
Registries: The Business Model
There is ample evidence that improving diabetes management lowers medical costs, but the savings generally flow to insurers and employers If doctors do not get a fair share of the financial rewards, it will be tough to get them to take on the work and expense required to implement registries Information technology is not the only investment required While initial set-up is relatively inexpensive and a registry can be housed on an office computer, a registry
demands personnel time to enter patient data, print reports and do follow-through Of the four projects featured at the roundtable, the two that have been the most successful have reliable funding sources In North Carolina, a community hospital supports the registry, making it available to affiliated practices The physicians see improved outcomes with minimal costs, while the hospital gains prestige by being associated with high-quality practices In California, an IPA representing nearly all the physicians in a rural community pays for registry expenses but realizes the benefits through pay-for-performance money paid by the insuring entity The registries in Vermont and New York have less sustainable funding VPQHCs Dr Cyrus Jordan noted that, thanks to outside funding, medical practices in the Vermont collaborative have not been charged for registry use Right now, he said, theres no business stake for these registries But eventually, he believes, pay-for-performance will enable doctors to reap the rewards
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With a
registry in place, patients are less likely to fall victim to neglect or their own resistance to treatment
The biggest
obstacles to widespread adoption of registries lie
not with the design of the registries themselves, but in the fundamentals that govern every workplace: dollars and cents and people
to provide the best medical care As Helen Riehle, executive director of the Vermont Program for Quality in Health Care VPQHC, observed, The young ones coming out of medical school may want things computerized, but doctors in their fifties arent terribly interested in learning a whole new way to practice medicine You have to convince everyone it will improve the care and make practicing medicine more rewarding A few obstacles to sustainability loom large: Financial resources Theres no clear business model for medical practices, noted Cyrus Jordan, MD, MPH, medical director of VPQHC While the health returns of registries are apparent, the return on investment can be elusive Small medical practices in particular have a difficult economic case to make Although registry software may be free or low-cost, upfront hardware installation and training costs may be large, and staff time spent on data entry can be burdensome Roundtable participants agreed that practices implementing registries require substantial and costly ongoing technical support To date, many
registry adoptions at the community level have been grant-funded, but thats not sustainable The busi6
ness model most likely to succeed is one that keeps the implementation costs low for medical practices see sidebar, page 5 Another model would have purchasers or payers offer a pay-for-performance program that rewards better health outcomes, such as improvement in HbA1c levels, or pays a bonus to subsidize the use of a registry Data entry Data can be entered directly into a spreadsheet from medical charts, extracted from billing records or pharmacy or lab data, or downloaded from EMRs Keeping data up to date is critical Practices are often stretched so thin that it is difficult to find someone to do the work, even if it involves just a few keystrokes Dr Glaseroff has resolved this issue by having the person who got the days charts call up patient info from his IPAs website, producing an encounter form for the days visit to be updated during the patient visit At the end of the day, the updated form is signed and filed in the patients chart in lieu of a progress note A copy is faxed to the IPA office where the new data is entered into the registry If lab results are not available
electronically, the note must be held until the labs are back and can be entered by hand In North Carolina, a similar system is employed A hospital clerk enters data into the reg-
The Power of the Portal
At the Humboldt Diabetes Project, Dr Glaseroff and his associates maintain patient and practice records through a computerized registry, one screen of which is pictured below The registry allows them to track services, alert patients and compare their patient populations to those of other clinics
Screen 2 includes Other notes, such as SM Goal Self Management Goal, where educators and providers can see patient goals from both education and office visits and can follow up with goals set in both places
Monthly reports sent to providers indicate if there have been no visits or an HbA1c test within the last six months
Services that are due are indicated in red and underlined These might include labs and other diagnostic tests
Patient is weighed and Body Mass Index is automatically calculated by the program at each visit This immediate feedback helps with self-management
The registrys aggregate profile with HbA1c a key measure is often the first time providers have seen how they
compare to other clinics in, say, percentage of patients up-to-date with routine testing
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Where to Learn More
wwwcdemscom The CDEMS User Network Programs Support for the Chronic Disease Electronic Management System wwwhealthdisparitiesnet The Health Disparities Collaboratives help practices improve chronic care with resources such as the Patient Electronic Care system PECS wwwimprovingchroniccareorg The Chronic Care Model developed by Ed Wagner, MD wwwihiorg The Institute for Healthcare Improvement founded by Donald Berwick, MD wwwconnectingforhealthorg A public-private collaborative working to create a nationwide health information environment wwwclinicalmicrosystemorg Tool kits to improve processes, technology, behavior and results in the places where patients, families and care teams meet wwwiproorg New York States quality improvement organization wwwpehrcorg The Physicians Electronic Health Record Coalition assists physicians, especially those in small and medium sized practices http://stagechcforg/topics/chronicdisease/indexcfm?itemID21718 Using Computerized Registries in Chronic Disease Care, a California Health Care Foundation study
istry from updated encounter forms In
New York, each participating practice does its own data entry, and this has been a barrier to broad use of the registry Functionality is the big thing, Dr Glaseroff said If a system makes an office managers life worse, forget it Workflow impediments Doctors in small offices are accustomed to being autonomous decision-makers Yet to make registries effective, a doctor may have to delegate more responsibility to staff–and not just record-keeping Dr Kelling noted that in his office, standing orders permit nurses to give a flu shot or a Pneumovax if necessary, or to allow a nutritionist to schedule patients who are due for eye and foot exams The Bigger Picture Registries are getting more and more attention as an integral component of good chronic care Indeed, the Chronic Care Model developed by Ed Wagner, MD, in the 1980s is premised on the use of registries to track patient care and progress But registries havent really caught fire Many small private practitioners are gun-shy about keeping electronic patient records of any kind, worried about the hassle and expense, and believe that there is no reason to do business differently than they have done for years Meanwhile, the growing
interest in EMRs as efficiency tools has obscured the dramatic impact the simpler yet effective registry systems can have on patient care Can registries take root in more practices around the nation? Certainly based on the cost relative to EMRs and the benefits that accrue from improved health outcomes, registries would appear, at least for now, to be a logical first step on the way toward a paperless medical-records world But for practitioners who toil in the real world of 10minute visits, missed appointments and
severe budget constraints, a registry has to offer more than psychic rewards And for physicians who dont relish shouldering an ever-increasing burden of keeping track of tests, assessments, shots and referrals, registry implementation has to mean more than a work speed-up The biggest obstacles to widespread adoption of registries lie not with the design or application of registries themselves, but in the fundamentals that govern every workplace–dollars and cents and people For registries to truly take hold in small private practices, two things have to happen First, there has to be a reasonable and sustainable funding mechanism in place Pay-for-performance seems a
promising vehicle for ensuring that practices not only dont lose money when implementing a registry, but actually have a chance to reap some financial reward from the effort Second, there has to be a rethinking of how work flows in a medical office– from how data is entered to how every member of the team is deployed In order to give better care, small private practices desperately need timely information But if they cant make the information-gathering mechanism they use pay off for their practices or function properly in their offices, they wont be able to use that information effectively In North Carolina, a community hospital saw the benefits of managing the system for private doctors, relieving them of financial and data entry burdens Local doctors and their teams, in turn, saw a way to reorganize their practices and provide better care Everyone, from nutritionists and nurses to doctors, has seen tangible results Our [registry] system makes health care less frustrating, Dr Kelling concluded It has changed my life in a positive way Ive been in the business 29 years, and I feel better about it than in a long time And so, he reported, do his patients
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Successful
adoption of a
registry requires a change in mindset and a profound rethinking of just how to provide the best medical care
Participants
Moderator: Alan Silver, MD, MPH, Medical Officer, IPRO, Lake Success, NY Richard J Baron, MD, FACP, President, Greenhouse Internists, PC, Philadelphia, PA; Senior Medical Consultant, Center for Health Care Strategies Amy Callan, Project Coordinator, Hudson Health Plan, Tarrytown, NY Joan Cerniglia, RN, JRC Healthcare Consultants, Inc, Garrison, NY Georganne Chapin, President and CEO, Hudson Health Plan; President and Founder, Hudson Center for Health Equity Quality, Tarrytown, NY Cathy Clancy, Senior Vice President of Strategy, Development and Network, Hudson Health Plan, Hudson Center for Health Equity Quality, Tarrytown, NY Terry DAttore, Chief Information Officer, Hudson Health Plan, Tarrytown, NY Jim DeMarco, Director of Application Development, Hudson Health Plan, Tarrytown, NY Lawrence L Faltz, MD, FACP, Senior Vice President for Medical Affairs and Medical Director, Phelps Memorial Hospital Center, Sleepy Hollow, NY; The New York Chapter of the American College of Physicians Alan Glaseroff, MD, Chief Medical Officer, Humboldt-Del Norte Foundation,
Eureka, CA Ted Herman, Director of Communications and Public Relations, Hudson Health Plan, Hudson Center for Health Equity Quality, Tarrytown, NY W Cyrus Jordan, MD, MPH, Medical Director, Vermont Program for Quality in Health Care, Montpelier, VT Margaret Peggy Leonard, MS, RN, C, FNP, Cm,Vice President for Clinical Services, Hudson Health Plan, Tarrytown, NY Paul Kaye, MD, Chief Medical Officer, Hudson River Community Health, Peekskill, NY Douglas G Kelling, Jr, MD, Concord Internal Pulmonary Medicine, Concord, NC Kim Kelly, New York Health Plan Association Albany, NY; Project Coordinator, NY Diabetes Coalition Karen Pennar, MPH, Director of Research, Hudson Health Plan, Hudson Center for Health Equity Quality, Tarrytown, NY Helen Riehle, Executive Director, Vermont Program for Quality in Health Care, Montpelier, VT Janet Jessie Sullivan, MD, Chief Medical Officer, Hudson Health Plan, Tarrytown, NY; Chair, NY Diabetes Coalition
For more information
Ted Herman Hudson Center for Health Equity Quality 303 South Broadway Tarrytown, NY 10591 914-372-2100 therman@hcheqorg The Hudson Center for Health Equity Quality Hcheq advocates for universal health care and other policies to
broaden health care access, and develops information technologies to support clinical initiatives and streamline the enrollment process for public health insurance Hcheq was formed in 2004 by Hudson Health Plan, a not-for-profit managed care organization operating in the lower Hudson Valley wwwhcheqorg
Source:hcheq.org
