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Tag: EHR

A Declaration of Health Data Rights

THCB & Health 2.0 are happy to be a small part of a very important declaration, made today by a mix of patients, physicians, technologists and concerned citizens. It’s a Declaration of Health Data Rights, and it’s extremely important because access to usable data is a very pressing problem in the health care system, and one that we have the opportunity to solve if we bake the concept into regulation and practice now, as electronic health data becomes more pervasive. Here’s the declaration:

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
  • Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

More information about how you can support this declaration, how it was created, a FAQ and what you can do to get involved is all at www.healthdatarights.org

A Dream of Reason

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The dream of reason did not take power into account…Modern medicine is one of those extraordinary works of reason…But medicine is also a world of power.

-Paul Starr, The Social Transformation of American Medicine, 1984

Today’s unveiling of a Declaration of Health Data Rights is an important action, long overdue, that represents a collaborative effort by a group of health care professionals – activists, entrepreneurs, technologists and clinicians – all colleagues we hold in high esteem.

The Declaration’s several points arise from a single, simple premise: that patients own their own data, and that that ownership cannot be pre-empted by a professional or an institution. And there lies its power, especially in the context of early 21st Century health care. It is a transformative ideal that currently is not the norm. But we join our colleagues in declaring that it should be.Continue reading…

Opening Physicians’ Notes to Patients

Steve DownsToday’s Boston Globe ran a story (page one, no less!) announcing our grant to Beth Israel Deaconess  Medical Center to run a three-site demonstration of opening up physicians’ notes to patients.  That’s not just making labs, drugs, allergies, etc. available to patients – it’s giving them access to the actual notes that the physician records about a visit.  Now these notes are technically available now – under HIPAA each of us has a right to our full medical records (of which physician notes are a part), but the process for obtaining them is often slow, cumbersome and even expensive in some cases.  Under this project, called Open Notes, patients will receive a secure email after the note has been completed and they can see it right away.  They’ll also be prompted to review the note prior to their next visit.  So instead of limiting access to the very determined, access will be easy for anyone who’s mildly interested.

Why would we fund this?  Several reasons, really.  First, is that at the Pioneer Portfolio, we’re very interested in patient-centered innovation.  Let’s face it:  virtually every trend suggests that people are going to have to become much more engaged in their care and in taking care of themselves.  And, as the pioneers of shared decision-making, patient centeredness, patient activation, online support groups and the health 2.0 community have shown us, real benefits come from this engagement.  So much of the energy and excitement in health care today is coming from the patient/consumer side of the equation.  So it’s a space where we believe we will find many innovations that can ultimately transform health.Continue reading…

Matthew went to Redmond, Pt 4: Nate McLemore

My final interview from my trip to Microsoft was with Nate McLemore, who is Director of Business Development for the Health Solutions Group and also involved in Microsoft’s policy & lobbying work. Nate talked about Microsoft’s role in the ongoing deliberations on meaningful use, ARRA and all that.

Meaningful meaning? (with UPDATE)

6a00d8341c909d53ef0105371fd47b970b-320wiThe first draft of “meaningful use” came out early yesterday, and I was struck by two things. First, probably influenced by the NCVHS recommendations and the Consumer Partnership for e-Health (See Update), the work-group included a lot of consumer-facing aspects in the concept of meaningful use. Here’s the full draft. Comments are being accepted now (but hurry as they’re going to come back with version two in a month, you have 9 days!).

But in terms of getting consumer activities into the 2011 definition the “Objectives” suggest that meaningful use includes:

  • Providing patients with electronic copy of or electronic access to clinical information (labs, medication list, allergies, medical “problem” list)
  • Providing access to patient specific educational sources
  • Providing clinical summaries for patients at each encounterContinue reading…

What Technology is Needed to Improve Care: EHRs or Registries?

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I spent a couple of days last week (June 10-11) at a conference co-sponsored by the HRSA Center for Quality and the NIH National Center on Minority Health and Health Disparities at which twenty of the highest-performing community health centers from the HRSA’s long-running Health Disparities Collaboratives (HDCs) described their accomplishments in improving primary care. They were stunning.

These health centers were not fresh-faced newcomers to the improvement collaborative du jour, but rather grizzled veterans who joined the HDCs ten years ago, have stuck with the method, and by now have embedded quality improvement deeply into their day-to-day operations and organizational culture.

If ever there could be a vivid demonstration of what is possible and right in the future of American primary care, this was it. Consider:

  • At CareSouth in South Carolina, under the leadership of Ann Lewis, the annual average cost of care for a diabetes patient is $343, compared with $1591 at comparable community providers in SC. Outcomes for these 3500 diabetes patients have improved steadily, with 50% of HbA1c’s less than 7.0. Appointments are available within 2 days. Staff turnover at CareSouth is 3%.
  • At FamilyCare in West Virginia, CEO Martha Carter has overseen a steady, radical improvement in diabetes care. Since 2002, the diabetes panel has increased from 1000 to 2700 while at the same time their average HbA1c has dropped from 7.8% to 7.1%. In the same period, the percent of pediatric patients with ER visits in the previous 6 months declined from 70% to 6%.

As team after team presented their stories, it became clear that these results were being achieved by safety net organizations on shoestring budgets, with highest-risk populations, despite the extra burdens of improvement work, data management and reporting. At La Clinica de la Raza in Oakland California, since 2007 100% of persistent asthmatics have been on controller medications. At Holyoke Health Center in Massachusetts the percent of diabetic patients with HbA1c’s over 10 has declined from 29% to 10% since 2000. At Hunts Point-Mott Haven in New York City, asthma hospitalization rates have decreased by 58% since 1997.

Together, these CHC leaders described a radically transformed model of primary care based on a fundamental change in attitude: instead of caring for patients ‘one at a time,’ they have accepted responsibility for a population of patients, based their criteria for quality on measures of the whole population, and persistently sought ways to improve those measures.

All of these high-performing health centers relied on information technology to achieve and measure results. But they referred to their systems as ‘registries’ – not as ‘electronic health records’ or ‘EMRs’.

EHRs versus Registries? – Lets Talk About Functions Instead

Despite the ever-present risk of oversimplifying a complex issue, and without worrying too much about what is really an EHR or a registry, let’s try to sidestep the controversy and focus instead on the software functionality that is needed to support the new model of primary care, as illustrated by these high-performing community health centers.

Today’s discussions of EHRs typically center on a relatively narrow range of functions that support the ‘one-at-a-time’ model of care: storing and displaying patient-specific clinical information at the point of care, reminding providers of the care needed by a patient during a visit, increasing the reliability and safety of common processes such as ordering tests and prescribing medications. When patient data can be readily shared among providers, these benefits are amplified across the continuum of care. These functions are important, but are only part what is needed to improve quality.

The registry functions described by high performing CHCs focus on using data to directly monitor and improve care for a population. We can distinguish two broad levels of registry functionality.

‘Base level’ registry functions are the starting point for practices working on quality improvement and are widely familiar to those participating in improvement collaboratives. They include:

  • Planning care for individual patients in advance of an office visit, based on evidence-based protocols
  • Providing ‘opportunistic’ care – that is, take every opportunity to provide care, even if it is not the reason for the visit
  • Tracking quality indicators  (for example, the percentage of diabetic patients with current eye exams) to evaluate effectiveness  of process improvements
  • Identifying gaps in performance to prioritize process improvements

The high performing CHCs who presented at the HRSA/NIH conference, many with over 10 years of experience in sustained care improvement, described uses of their registries that extend far beyond either EHRs or base-level registry functions. Advanced registry functions mentioned by these teams include the ability to

  • Stratify patients by severity in order to target planned care (for example, patients with DM with a recent increase/decrease in BMI)
  • Provide patient-specific outreach reminders to patients for needed care
  • Create individual patient care plans with goals, track patient progress against the plan, and identify subgroups of patients based plan progress
  • Identify subpopulations (by gender, age, geographic area) to differentiate process improvement interventions
  • Identify subpopulations with special needs to launch community-wide campaigns (e.g. high utilizers with no insurance and special needs)
  • Provide ubiquitous performance feedback to motivate providers and staff
  • Identify groups of ‘non-compliant’ patients to diagnose causes and target interventions such as promotora, case management, or group visits
  • Organize, coordinate and schedule ancillary and community-based services
  • Create and manage provider panels
  • Deliver transparent provider-specific feedback to encourage productive competition
  • Identify patients for clinical trials
  • Distribute a newsletter to all families in the practice that includes current performance data
  • Summarize utilization improvement and cost savings for negotiations with payers and networks, and to obtain grant funding

HITEP or Mis-Step?

As I listened to the conference presentations, I scribbled notes. I was pushing a deadline to respond to a Request For Comments from the Office of the National Coordinator for Health Information Technology (ONC) [http://edocket.access.gpo.gov/2009/pdf/E9-12419.pdf ] regarding a proposed ‘Health Information Technology Extension Program’ (HITEP). This program, fueled by $2B of stimulus funds, envisions a national network of ‘Health Information Technology Regional Extension Centers’ which will employ ‘extension agents’ to coach providers on the selection, implementation and ‘meaningful use’ [whatever that means] of certified EHRs.

Parsing the RFC during coffee breaks, I was struck by the disconnect between the ‘silver bullet’ overtones of the ONC’s vision of EHRs everywhere, and the dogged improvement work being carried out by the CHCs presenting their results to the audience of HHS personnel and health services researchers.

I was also struck by the fact that no ONC staff attended the meeting, although many agencies across HHS were represented. So I fear that the message about the software functions that are so ‘meaningful’ for quality improvement will go unheard as HITEP is put into play.

As I was leaving the conference I talked to a physician leader of one of the CHCs who was in charge of his center’s EHR adoption project. His center has been a long-standing user of registry software and has accomplished dramatic improvements in care. Their group adopted an EHR product based primarily on it customizability, and he has personally spent half of his time for the past two years reshaping the EHR software to support the registry functions that his practice has come to rely on.

More than ever, I am fearful that the ONC is pushing technology for technology’s sake, without thinking through the software functions that are actually needed by the providers who are pioneering the transformation of primary care.

ehrRichard Scoville, PhD, is an independent consultant specializing in healthcare quality improvement and performance measurement. He is an Adjunct Professor in the Department of Health Policy and Administration at the University of North Carolina at Chapel Hill where he teaches courses in healthcare quality improvement and informatics. He serves as an improvement advisor to the Institute for Healthcare Improvement, NICHQ, the Cincinnati Children’s Hospital Medical Center, and the Federal Health Resources and Services Administration on a range of collaborative improvement and systems design projects.

An Open Letter to Dr. David Blumenthal

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Below is a slightly expanded version of a letter I recently sent to Dr. Blumenthal, the new National Coordinator for Health Information Technology, and the members of the new national HIT Policy Committee.

Dear Dr. Blumenthal:

I am writing to you on the need for user-friendly electronic health record (EHR) software programs.  As a practicing physician with first-hand experience with hard-to-use CCHIT-certified EHR software, I would like to share with you a solution to this vital issue.

The CCHIT model for EHR software certification is fatally flawed because it mandates hundreds of required features and functions, which take precedence over good software design.  This flawed CCHIT model takes valuable physician time and effort away from patient care and leads to increased potential for errors, omissions, and mistakes.

As a clinician, I have had first-hand experience with a top-tier CCHIT-certified EHR.  Despite being computer literate and being highly motivated, after a year and a half of concerted effort, I still cannot effectively use this CCHIT-certified program.  The poorly designed software constantly intrudes on my clinical thought process and interferes with my ability to focus on the needs of my patients.

Just this year the National Research Council report on health care IT came to a similar conclusion. The report found that currently implemented health care IT programs often

provide little support for the cognitive tasks of the clinicians or the workflow of the people who must actually use the system.  Moreover, these applications do not take advantage of human-computer interaction [HCI] principles, leading to poor designs that can increase the chance of error, add to rather than reduce work, and compound the frustrations of executing required tasks.

Our health care system needs user-friendly EHR software, firmly grounded on what we have learned about how the human brain takes in, organizes, and processes information.

As an example of software based on usability principles, I would like to share with you a new design, the EHR TimeBar, which is one example of user-friendly EHR software design that can dramatically improve patient care.  Please see attached figure and description at the end of this letter.

I have no financial interest in this software design. My goal is to promote the emergence of user-friendly EHR technology that will improve the day-to-day lives of my colleagues and help us take better care of our patients.

We absolutely need standards for data, data transmission, interoperability, and privacy. There is no need, however, to specify the internal workings of EHR software. To do so will stifle innovative software designs that could improve our health care system. If CCHIT is allowed to mandate the meaning of the term “certified-EHR,” the $17 billion allocated for EHR adoption and use will largely be wasted.

The solution is to keep EHR certification rules simple to encourage an open market model. An open market will foster a competitive environment, leading to the emergence of user-friendly EHR software that is simple, helpful, efficient, and inexpensive – software that will improve both patient care and the day-to-day lives of our clinicians.

I appreciate your work and the work of the HIT Policy Committee members in crafting our new national health care IT plan.

Sincerely yours,

Richard Weinhaus, M.D.

Clinical Groupware: When Not-As-Good Is Actually Better

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In a February 13, 2009 blog post I introduced the idea of Clinical Groupware as a low cost, modular, and cloud computing alternative to traditional electronic health record technology for physicians and medical practices. Central to the concept of Clinical Groupware is IT support for care coordination and continuity, achieved through shared access to personal care plans and point-of-care decision supports. In this post I’d like to put a few more ideas on the table, specifically with respect to the market niche that Clinical Groupware may ultimately fill, including comments by several individuals whose opinions or work may be crucial to the success of Clinical Groupware over the next 1-3 years.  (Anything farther out than that is simply dreaming.)  Consider this an interim report on an emerging story with an indefinite timeline.

Interest in this topic has been, of course, heightened by the recently passed federal AARA/HITECH, provisions of which will provide incentive payments to physicians of as much as $44,000 over a five year period commencing in 2011, provided that the physicians can demonstrate the “meaningful use” of “certified EHR technology.” It’s always more exciting when there’s real money in the mix. Will Clinical Groupware qualify as “certified EHR technology?”  Many physicians and developers are hoping it will. Here’s why.Continue reading…

Are Today’s EMRs Up to the Job?

RS Head Shot 1 This post is a bit different from most of the policy points, institutional cases and reports of technical innovations that I’ve been reading on THCB in the past months. I want to pose the above Question to the readers of this blog, since many of you are uniquely positioned help answer it in your comments. And I have a hope that your responses to this Question will help nuance the technical and policy debate over EMR adoption.

First, let’s unpack the Question:

1. THE JOB. In the past several years, a number of public and private initiatives, most recently ABMS’s Improving Performance in Practice (a project with which I am affiliated) and NCQA’s Patient Centered Medical Home,  have been making fitful progress toward a new post-reform model of primary care:  patient-centered, accessible, care-coordinating, population-focused, prepared, proactive, and the rest. These collaboratives and demonstration projects have all stressed the importance of computerized ‘registry functions’ as the foundation for these progressive capabilities. One, the Health Disparities Collaboratives run by HRSA, went so far as to commission a registry program and provide it free to participating clinics.Continue reading…

Catalyzing the app store for EHRs

Dr. Lumpkin serves as director of the Robert Wood Johnson Foundation’s Health Group, where he is responsible for planning and program management. Prior to joining RWJ, Dr. Lumpkin led the Illinois Department of Public Health for 12 years. As  assistant vice president, Downs plays a leading role on the Foundation’s Pioneer Portfolio team. During his tenure at the Foundation he has created, developed,  or overseen the  Foundation’s investments  in such key initiatives as Project HealthDesign, InformationLinks, the Health e-Technologies Initiative, the Public Health Informatics Institute, Connecting for Health, and Common GroundHis writings may be found at Pioneering Ideas, where this post first appeared.

Iphone_health Recently, Steve posted about the idea, floated by Ken Mandl and Zak Kohane, that EHRs (or health IT more broadly) could move to a model of competitive, substitutable applications running off a platform that would provide secure medical record storage.  In other words, the iPhone app model, but, for example, you could have an e-prescribing app that runs over an EHR instead of the Yelp restaurant review app on your iPhone.  We’re thinking about the provider side of the market here, as Google Health and Microsoft HealthVault are already doing this on the consumer side.Continue reading…