ONC Blog: Beacon Communities Lead Charge to Improve Health Outcomes

Blumenthal Blogs on Health IT Buzz Blog plus add’l Links
Beacon Communities Lead the Charge to Improve Health Outcomes
Wednesday, May 5th, 2010 | Posted orginally by Dr. David Blumenthal on Health IT Buzz Blog.
Excerpted directly from ONC Health IT Buzz Blog.
Across the nation, in communities large and small, health information technology (health IT) innovators are boldly leading the way toward the adoption and meaningful use of electronic health records (EHRs). Yesterday, we awarded $220 million in Beacon Community cooperative agreements to 15 trailblazing community consortiums that will demonstrate how the meaningful use of electronic health records can serve as a critical foundation for achieving measurable improvement in the quality and efficiency of health care in the United States.

Health care providers often suggest that health IT is challenging to implement, and that certain types of communities are better prepared (and funded) to reap its benefits.

The 15 Beacon Communities named today, however, demonstrate the significant diversity among those who have been successful in implementing and using health IT. The areas of diversity represented in the consortiums receiving grants include:

  • Geographic – Beacon Communities are located from coast to coast and beyond to Hawaii
  • Population Density – Beacon  Communities serve both urban and rural populations
  • Populations – Beacon programs address health disparities among minority populations, including Native American, African American, and Hispanic, among others

Equally important, these communities are committed to demonstrating tangible outcomes:

  • Individual Health Outcomes – Beacon Communities’ outcomes encompass a variety of disease states and treatment approaches, including diabetes, cardiovascular disease, asthma, and chronic obstructive pulmonary disease
  • Population Health outcomes – Beacon Communities target varying dimensions of population and public health, from improved immunization and cancer screening rates, to innovations for public health surveillance

Additionally, the Beacon Community Program demonstrates robust collaboration among Federal agencies.   Two of the grantees seek to improve Veterans’ care by leveraging the Department of Defense’s and Department of Veteran Affairs’ Virtual Lifetime Electronic Record (VLER) program for active duty, Guard and Reserve, retired military personnel, and eligible separated Veterans.

These diverse partners will provide unique insights into best practices that can be applied to similar communities nationwide, as they strive to build a health IT infrastructure as a critical foundation for health system improvement. In doing so, the Beacon Community program will support the nationwide adoption of health IT by 2015.

I congratulate the Beacon Community awardees and am confident the Beacon Communities will succeed in demonstrating the promise of health IT and facilitating other communities’ adoption and meaningful use of technology.

–David Blumenthal, M.D., M.P.P. – National Coordinator for Health Information Technology
For the original post, comments and the complete Health IT Buzz Blog.
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White House Video of VP Biden and Sec’y HHS Sebelius Announcement

Additional e-Healthcare Marketing posts with info on Beacon Communities
–Blumenthal Letter #14 on Beacon Communities
–White House Announcement on $220 Million Awards with Communities Listed
–ONC Named for Beacon Communities Program
–ONC Roles and Posts–Includes Overall Director, Ofc of State and Community Programs

Boston Health IT/HIE Conferences meets goals center stage and off stage

Blumenthal, governor put health IT center stage in Boston;
Off stage state HIE, Medicaid and other officials network
Guided by the deft hand of Massacussetts Secretary of Health and Human  Services JudyAnn Bigby through a series

Blumenthal: Live, Projected, Streaming

Blumenthal: Live, Projected, Streaming

 of scheduling shifts, the Boston-based national conference on Health IT with 600 participants from 30 states on April 29-30, 2010, included inspirational keynotes from National Coordinator for Health IT David Blumenthal and Surgeon General Regina Benjamin, as well as an enthusiastic welcome from host Governor Deval Patrick who moderated a panel as well.

Off stage state HIE and Medicaid directors and leaders took the opportunity to network and compare notes, as well as take advantage of the smaller workshops where session leaders focused on encouraging discussion and bringing up issues that needed to be addressed in the accelerating Health IT federal-state initiative.

Bernie Monegain reported for Healthcare IT on April 30, 2010, “The government will announce ‘soon – it should be very, very soon’ which 15 communities of the 130 that applied will be awarded Beacon Community grants, National Coordinator for Health IT David Blumenthal, MD, said.” In addition to supporting improved electronic health record implementation and information exchange in communities that have already demonstrated great strengths in those capabilities, these Beacon communities will share lessons learned and best practices in achieving measurable outcomes in  health care quality, safety, efficiency, and population health with communities across the country, according to the Office of the National Coordinator site. 

CMIO.net story by  Jeff Byers  on April 29, 2010 was headlined “CMIO Blumenthal gets personal, calls for teamwork among health IT pros.” Seeing younger colleagues using electronic health records, Blumenthal noted, per Byers reporting, “I was not going to be the only one in my physician group of ten not using it.”  Blumenthal’s message is increasingly appealing to physicians’ sense of professionalism and focus on delivering the best patient care.

Byers futher reported April 29, 2010 in CMIO.net on a discussion of the role of consumers and patients in Health IT by a  ”Panel: How do HIEs, EMRs affect patient-physician experience?,” and provides the viewpoint of each of the panelists. 

ComputerWorld’s article by Lucas Mearian on April 30, 2010 reported “Health IT funding to create 50,000 jobs; Sixty regional IT help centers will help health care facilities implement electronic medical records.”

In addition to regional collaboration meetings among state officials grouped according to CMS regions, Workshops included “Achieving Sustainable Success,” Making a Difference–Health IT and Clinical Quality Improvement,” “State Initiatives in Healthcare Reform,” “Successful HIEs–How They Did It and How Ii Helps,” “Jobs, Jobs, Jobs–Health IT and State Economic Development Policy,” Creating Effective Public/Private Partnerships,” “EHR Early Adopters–How They Did It and How It Helps,” and “Health IT, HIE, and Public Health.”

One key panel, providing a sweeping overview of Health IT policies and standards, was moderated by Internet publisher pioneer Tim O’Reilly of O”Reilly Communications.

State HIE Directors are reportedly meeting with the ONC next week, and this conference acted as a bit of a warmup, with relatively new officials getting to connect, and others catch up.

See previous post on conference on e-Healthcare Marketing.

NOTE: As Jackie Slivko pointed out on LinkedIn on May 3, 2010, “Local and regional healthcare leaders as well as key vendors were also present and had an unprecedented opportunity to connect, learn from each other and network. Kudos to Mass Health Data Consortium http://www.mahealthdata.org/ , and the eHealth Initiative at the Mass Technology Collaborative http://www.maehi.org/ , both of whom continue to provide related forums and seminars. For live video and more from the conference, see http://mahit.us/ .”

Blumenthal blogs “Promoting Use of Health IT: Why Be a Meaningful User”

Promoting Use of Health IT: Why Be a Meaningful User
Tuesday, April 27th, 2010 | Posted by: Dr. David Blumenthal 
on ONC’s Health IT Buzz Blog. Excerpted from ONC site.
 

“As I write, physicians throughout the United States are deciding whether to become meaningful users of electronic health records by 2011 when Medicare and Medicaid start making extra payments to meaningful users.  For some the decision may be pretty simple.  Almost 200,000 doctors already have adopted EHRs and are using them at a basic or sophisticated level.  For these physicians, the journey to meaningful use, and its financial and clinical rewards, may be comparatively short. Many other doctors, however, remain undecided.

“I don’t want to minimize the obstacles.  When I started using an  EHR, I found it challenging.  I often longed for a dose of my old prescription pad (confession – I cheated once in a while). I chafed at reconciling medication lists, updating problem lists, scanning through seemingly endless consultant notes. (In the past, many wouldn’t have been available – lost somewhere in the paper world.) It was much easier to use the triplicate x-ray requisition I had used for 30 years than the radiology order entry software required  by my EHR.  My visits were longer and more complicated.  Every time I turned on the computer, it seemed, I had to learn something new.

“But I am glad I did it, as are 90 percent of all physicians who adopt an EHR, according to a scientific survey published in the New England Journal of Medicine. My EHR made me a better doctor.  I really knew what was going on with my patients.  I could answer their questions better and more accurately.  I made better decisions.  I felt more in control.

“Physicians don’t go into medicine because it’s easy.  They go through grueling training – spending endless days and nights at the bedside or in the OR.  They face tough personal and clinical decisions throughout their professional lives. They constantly have to grow and learn to keep up with the science and practice of medicine. That’s what makes them the professionals they are.  That’s what earns their patients’ and colleagues’ respect and admiration.  That’s what gets them up in the morning knowing there’s nothing else they would rather be doing.

“The EHR is just another of the transitions that physicians are constantly called upon to make in the interest of their patients, their professional competence, and their professional self-esteem.  Its advent is inevitable – no more avoidable than the arrival of the stethoscope in the early 1800s or anti-sepsis in the mid 1800s ( both of which some physicians furiously resisted) or the ICU in the mid-1900s.  Positive change is often disruptive, but it is irresistible nevertheless. In 10 years, paper records will be the exception.  Lagging physicians will be seen as quaint throwbacks, no longer at the top of their game,  nostalgic reminders of a bygone age when offices brimmed with manila folders and piles of forms, or when nurses and doctors searched endlessly on hospital rounds for that one essential patient chart that always seemed missing from the nursing station.  (How many millions of hours have clinicians spent wandering hospital floors looking for those elusive missing paper records?).

“Still, some physicians may be tempted to put off the inevitable, trying to postpone the disruption and expense.  Why not wait five or six years?  Maybe it will get easier?  Less expensive?

“For several reasons.  First, the sooner physicians start using an EHR, the sooner they and their patients will realize its benefits – the ability to share patient data with colleagues and patients, the ability to retrieve old data effortlessly, the ability to access patient records remotely, so they answer patient questions intelligently from home, or even from a medical meeting.

“Second, right now, the federal government is making a once in a lifetime, never to be repeated, offer: it will help physicians pay for the transition with up to $44,000 in extra fees from Medicare, or $63,750 from Medicaid.  Physicians can take the leap now with financial and technical help from the government.  Or they can do it on their own (or facing a financial penalty) in five years.

“Third, anyone who is building a practice, and wanting to recruit young, talented physicians needs to confront the reality that the next generation will expect and demand that their own medical home have a modern information system. I know this from personal experience.  With two children in medical school, and a daughter in law who is an intern, I know young physicians will never settle for paper records.  Wait, and the cream of the recruiting crop will pass you by.

“To me the choice is clear.  Physicians’ professional, clinical and financial interests all point in the same direction.  Become part of the future.  Become a meaningful user of an electronic health record.”

–David Blumenthal, M.D., M.P.P. – National Coordinator for Health Information Technology

See ONC Health IT Buzz Blog to make direct comments.

Challenges/Barriers to Clinical Decision Support (CDS) Implementation

AHRQ Releases Report on “Challenges to Clinical Decision Support (CDS) Design and Implementation”
“A new report” produced for AHRQ  National Research Center for Health IT dated March 2010 and released on April 14, 2010, ”examines the challenges and barriers to implementing clinical decision support (CDS) and found workflow, design and clinician’s level of support are just some of the issues that can affect successful CDS implementation. Challenges and Barriers to Clinical Decision Support (CDS) Implementation (PDF, 254 Kb) describes the challenges and barriers that AHRQ contractors encountered as part of their CDS demonstration project. These challenges and barriers can be successfully addressed by employing several key strategies, which include utilizing standard data exchange formats, providing clinicians with appropriate training, and modifying CDS to address clinicians’ needs.”  Report authors are June Eichner, M.S. and Maya Das, M.D., J.D. of NORC at the University of Chicago.

The following are excerpts from the report Introduction, Lessons Learned, and Project Teams.
I. INTRODUCTION
Overview of Clinical Decision Support
“To improve the quality of medical care in the United States, efforts are being made to increase the practice of evidence-based medicine through the use of clinical decision support (CDS) systems. CDS provides clinicians, patients, or caregivers with clinical knowledge and patient-specific information to help them make decisions that enhance patient care. The patient’s information is matched to a clinical knowledge base, and patient-specific assessments or recommendations are then communicated effectively at appropriate times during patient care. Some CDS interventions include forms and templates for entering and documenting patient information, and alerts, reminders, and order sets for providing suggestions and other support. Although CDS interventions can be designed to be used by clinicians, patients, and informal caregivers, this report focuses on the use of CDS interventions by clinicians to improve their clinical decisionmaking process. In addition, while CDS interventions can be both paper and computer based, their application in the following projects is limited to electronic CDS because of its greater capability for decision support.

“The use of CDS systems offers many potential benefits. Importantly, CDS interventions can increase adherence to evidence-based medical knowledge and can reduce unnecessary variation in clinical practice. The process for development and implementation of CDS systems can establish a standard knowledge structure that aligns with written evidence-based guidelines published by medical specialty societies or Federal task forces, such as the U.S. Preventive Services Task Force (USPSTF). CDS systems can also assist with information management to support clinicians’ decisionmaking abilities, reduce their mental workload, and improve clinical workflows.3 When well designed and implemented, CDS systems have the potential to improve health care quality, and also to increase efficiency and reduce health care costs.

“Despite the promise of CDS systems, numerous barriers to their development and implementation exist. To date, the medical knowledge base is incomplete, in part because of insufficient clinical evidence. Moreover, methodologies are still being designed to convert the knowledge base into computable code, and interventions for conveying the knowledge to clinicians in a way they can easily use it in practice are in the early stages of development. Low clinician demand for CDS is another barrier to broader CDS system adoption. Clinicians’ lack of motivation to use CDS appears to be related to usability issues with the CDS intervention (e.g., speed, ease of use), its lack of integration into the clinical workflow, concerns about autonomy, and the legal and ethical ramifications of adhering to or overriding recommendations made by the CDS system. In addition, in many cases, acceptance and use of CDS systems are tied to the adoption of electronic medical records (EMRs), because EMRs can include CDS applications as part of computerized provider order entry (CPOE) and electronic prescribing (eRx) systems. This is evidenced by the results of the 2008 National Ambulatory Medical Care Survey, which show that only 38 percent of physicians used an EMR, and only 4 percent used an EMR with CDS system capabilities.

“Recent Federal and payer initiatives are providing support for EMR and CDS adoption. For example, the Agency for Healthcare Research and Quality (AHRQ) has funded CDS demonstrations. In addition, AHRQ and the U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology (ONC) funded the development of a Roadmap for National Action on Clinical Decision Support and held workshops to support CDS system development and implementation. Most recently, the American Recovery and Reinvestment Act of 2009 (ARRA) created financial incentives through Medicare and Medicaid for providers to “meaningfully use qualified” electronic health records (EHRs). Under the Notice for Proposed Rulemaking (NPRM) for the EHR Incentive Program published by the Centers for Medicare & Medicaid Services (CMS), the criteria for meaningful use include the implementation of five CDS rules, including the ability to track compliance with those rules.

“The incorporation of evidence-based guidelines into an EMR by using CDS interventions that include quality measures may help align care delivery with payment incentives. Federal and private payers’ current and proposed payment models offer incentives based on the quality of care provided.  CDS alerts, reminders, and standardized order sets can also help clinicians follow these guidelines and support the payment of clinicians based on their performance (e.g., pay-for-performance). In addition, CDS documentation can be used to evaluate care from a population-based perspective and to move from the measurement of care processes to the measurement of patient outcomes.”

Overview of AHRQ’s Clinical Decision Support Demonstration Projects

“In 2008, AHRQ funded two demonstration projects in support of the design, development, and implementation of CDS systems. These projects aimed to:

• Incorporate CDS into EMRs that have been certified by the Certification Commission for Health IT (CCHIT).

• Demonstrate that CDS can operate on multiple information systems.

• Establish lessons learned for CDS implementation relevant to the health information technology (IT) vendor community.

• Assess potential benefits and drawbacks of CDS, including effects on patient satisfaction, measures of efficiency, cost, and risk.

• Evaluate methods of creating, storing, and replicating CDS across multiple clinical sites and ambulatory practices.”

“The projects were required to select two or more clinical practice guidelines in the public domain that had not yet been translated into a broadly available electronic CDS intervention. The chosen clinical practice guidelines were to address either preventive services or management of multiple common chronic conditions. The contractors were then to implement the CDS intervention in at least one health IT product certified by CCHIT, applying American National Standards Institute (ANSI) Health Information Technology Standards Panel (HITSP) standards when available and applicable. The CDS system being developed was to be demonstrated in ambulatory settings. In addition, the projects were required to evaluate methods for creating, storing, and replicating the CDS system across multiple clinical sites and EMR systems.

“The two demonstration project contracts were awarded to Brigham and Women’s Hospital (BWH) for its Clinical Decision Support Consortium (CDSC) project and Yale University School of Medicine for its GuideLines Into DEcision Support (GLIDES) project. Each project is funded for $2.5 million for a 2-year period, with an option for AHRQ to continue funding the projects for up to an additional 3 years.”

Objectives of This Report
“This report briefly describes the two AHRQ CDS demonstrations, as well as the challenges and barriers that the contractors encountered during the initial periods of their CDS demonstration project, how they addressed these obstacles, and the effectiveness of their strategies. The goal of this report is to share the experiences of the contractors throughout the planning, design, and implementation phases to aid others who are considering funding or undertaking similar efforts.”

Methodology
“The information for this report is based on the contractors’ monthly status reports, project proposals, evaluation plans, and other documents submitted to AHRQ project officers. In addition, discussions were held with the contractors’ staff onsite and by telephone from June to September 2009. A review of the general CDS literature was also performed in order to provide a context for the contractors’ activities.”

Terminology
“The list below defines terms used throughout the report that may have multiple definitions. These definitions are used consistently throughout the document.

• “Guidelines” refers to written statements developed by medical specialty societies, disease-focused organizations, or expert panels to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.

• “Rules” refers to the abstraction of guidelines into programmable prediction statements (i.e., IF-and-THEN statements).

• “CDS Service” refers to a CDS functionality accessible over standard Internet protocols that is independent of the underlying EMR platform or programming language.

• “CDS intervention” refers to the variety of CDS applications (e.g., alerts, reminders, order sets) used to communicate knowledge to the clinician.

• “Knowledge management tool” refers to resources designed to assist with the extraction, evaluation, storage, and retrieval of guidelines, frameworks, pieces of code, and other artifacts related to CDS system development (e.g., Documentum’s Web Publisher, Content Management Services, the Guideline Elements Model (GEM) software tool GEMCutter, EXTRACTOR, Conference on Guideline Standardization (COGS) statement, Guideline Implementability Appraisal (GLIA)).

• SmartForm is an electronic form with electronic completion, dynamic sections, database calls, electronic submission, and other capabilities. It enables writing a multi-problem visit note while capturing coded information and providing sophisticated decision support in the form of tailored recommendations for care.

• Dashboard is a Web-based application available to clinicians that displays relevant and timely information to support clinical decisionmaking for patient care, quality reporting, and population management. Dashboards may support viewing of condition-specific information and/or functionality to take action (e.g., ordering of a lab test) from the application itself.”

Organization
“The remainder of this report is organized into three sections. The next section provides a description of each project and summary of the challenges and barriers faced by each of the contractors. This is followed by an analysis and discussion of their experiences. The last section offers overall conclusions and recommendations for future work to promote CDS design and implementation.”

To read descriptions of the projects and analysis and discussion, see the report pdf. This post skips to conclusions.

Lessons Learned
“The experience to date of these two contractors provides lessons that are particularly relevant to guideline developers, IT vendors, standards development organizations, health care provider organizations, and policymakers. The lessons particularly pertinent to each group are given below.”

Guideline developers:
 “Guidelines should be specific, unambiguous, and clear.

 Guideline development committees should include individuals with programming expertise and health informaticians.

 Updates of the guideline recommendations are needed. Guideline developers should consider issuing statements of update when new medical evidence is brought forth and providing regular review and updates of guidelines. For example, the USPSTF re-reviews each topic every 5 years.”

IT vendors:
 “As most organizations utilize vendor systems with hard-coded functionality, vendors should consider ways to reduce the need for an organization to rebuild the CDS content when upgrading or implementing a new EMR system (e.g., adopting a module or service-oriented approach).

 Incentives for vendor participation in CDS initiatives should be aligned with efforts, such as defining meaningful use criteria, to encourage standards adoption.”

Standards development organizations:
 “Implementation specifications and guides should be produced that simplify existing standards and support consistent application of standards for messaging, interfacing, and mapping purposes.

 The development of standards and implementation specifications and guides should accommodate appropriate clinical practice variations.

 When developing newer versions of standards, ways to reduce interoperability problems and data-mapping issues should be considered.”

Health care provider organizations:
 “The goals of CDS development and implementation projects should align with organizational priorities to promote buy-in from both management and staff.

 The organizational working environment should foster meaningful EMR usage, including not only software and hardware needs but also the attitudinal changes needed to support adoption.

 Engaging a well-respected clinician “champion” to lead CDS education, training, and implementation efforts will promote clinician adoption.

 Institutions wishing to utilize a knowledge management process will need access to personnel with specialized knowledge in clinical informatics and experience in designing new tools or using existing tools to support CDS development.”

Policymakers:
 “The development of standards and clinical guidelines can promote the goals for interoperability as well as support the development of the knowledge base necessary for developing CDS systems.

 Incentives by funding bodies, including governmental entities, can promote EMR installation, implementation, and use of these systems. To achieve the promise of EMR to improve the quality of health care through interventions such as CDS systems, policymakers need to continually reexamine ways to promote adoption of quality practices, including performance-based payments, incentives, and providing clinicians and patients with comparative data.”

Future Work To Support CDS
Although the contractors were able to overcome many of the challenges and barriers they faced, they were not able to overcome them all. Additional research and work are needed to address these outstanding obstacles, as they are important for the advancement of the design and implementation of CDS systems. These include:”

° “Development of a stronger evidence base for guidelines (single conditions, comorbidities, associated treatment options).

° Creation of more specific implementation guides and specifications to promote consistent application of standards.

° Comparison of the resources required by a provider organization to develop its own knowledge management system vs. use of a ready-made knowledge management portal.

° Long-term evaluation to determine whether clinicians’ use of the EMR and CDS systems changes or stabilizes over time.

° Understanding of factors that enable EMR and CDS intervention acceptance and use by clinicians.

° Effectiveness of the various CDS interventions on clinician performance and clinical outcomes.”

The Two Demonstration Project Teams

1. Clinical Decision Support Consortium
The CDSC project was awarded to Brigham and Women’s Hospital and also includes Partners HealthCare System (Partners), an integrated health care system that includes primary care and specialty clinicians, community hospitals, two founding academic medical centers (including BWH), specialty facilities, and other health-related entities. For this project, BWH is collaborating with the Regenstrief Institute, the Veterans Health Administration (Roudebush Veterans Administration Medical Center), Kaiser Permanente, the University of Medicine and Dentistry of New Jersey (UMDNJ), MidValley Independent Physicians Association (MVIPA), and EMR vendors (i.e., Siemens Medical Solutions, GE Healthcare, and NextGen). Management of and technical expertise for this project are provided by staff of the Partners HealthCare System’s Clinical Informatics Research and Development (CIRD) group.”

2. GuideLines Into DEcision Support
The GuideLines Into DEcision Support (GLIDES) project is a collaboration between Yale University School of Medicine, Yale New Haven Health System, and the Nemours Foundation.”

Managing Personal Health Information: An Action Agenda from AHRQ Workshop

Executive Summary from AHRQ Workshop:
“Managing Personal Health Information:
An Action Agenda” 
Mary Mosquera reported in Government HealthIT on April 12, 2010 “The Agency for Healthcare Research and Quality (AHRQ) released a set of recommendations last week calling for health IT vendors to focus more of their attention on the needs of consumers in developing electronic health record systems.”

Per AHRQ Web site accessed March 13, 2010, “Managing Personal Health Information: An Action Agenda (PDF, 828KB) provides a framework for studying personal health information management and patient-centered health IT to advance research, implementation, and policy development in this field through specific recommendations and an action agenda. These recommendations will be useful for health IT researchers, industry, and policymakers.”

The executive summary of the report, dated March 2010, is excerpted below.

Report PDF
Executive Summary

Background
This report presents key recommendations and an action agenda developed during a 2-day workshop convened by the Agency for Healthcare Research and Quality (AHRQ) on July 27-28, 2009, entitled “Building Bridges: Consumer Needs and the Design of Health Information Technology.‖ The purpose of this event was to develop a framework for characterizing personal health information management (PHIM) that would inform the design of effective consumer health information technology (health IT) systems. The workshop brought together leaders from multiple disciplines, including health sciences, health informatics, information science, consumer health IT, and human factors research, with specific expertise in the fields of PHIM and/or health IT. The workshop moderator was Patricia Flatley Brennan, who also served as an advisor on this report.

“Through small-group discussions and presentations, the participants considered the diverse needs of different consumer groups with respect to managing their personal health information and how consumer health IT solutions can be designed to better meet those needs. Based on these discussions and presentations, the participants were asked to set an agenda for advancing the field of consumer health IT that would include specific recommendations for research, industry, and policy.”

Key Workshop Themes
“Effective management of personal health information empowers patients to actively partner with their health care providers in making important health care decisions, which can potentially lead to better health care and better health care outcomes. At the same time, PHIM involves a complex array of tasks that many consumers find challenging. These tasks may include tracking and integrating health-related information obtained from various sources; coordinating care across different health care providers; and making critical decisions about one’s health based on physician recommendations, test results, office visits, and other bits and pieces of personal medical information. The requisite tasks can be even more complicated for individuals with special needs, such as the elderly, whose health care needs often exceed those of the general population, and whose capacity to effectively manage those needs is typically compromised by poor health or other considerations.

“In light of these considerations, workshop participants were asked to share their understanding of consumers’ current PHIM practices, and to identify what more needs to be known about those practices in order to design better consumer health IT solutions. Participants were also asked to consider the extent to which currently available tools meet consumer needs, and what changes or design innovations would be needed to produce more patient-centered health IT systems. The following points highlight the main themes that emerged from the workshop.”

Defining PHIM
“Health care consumers manage their personal health information in countless different ways, and many factors influence the methods they use to perform the tasks and activities that characterize PHIM, such as health status, age, and attitudes about health and medical care. Moreover, a consumer’s health information management practices can change over time as his or her capacities, health status, family status, and needs change. PHIM can occur anywhere, anytime; in other words, it is not restricted to a single, isolated location or event like a doctor’s office or a medical appointment. All of these considerations have important implications for the design of consumer health IT systems. For example, they point to the need for systems that are flexible and accessible to different types of users and across different settings.”

Design Issues
“Consumer health IT solutions can play an important role in enabling patient-centered care, which the Institute of Medicine (IOM) defines as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions‖ (IOM, 2001). In order to truly benefit consumers in this way, however, consumer health IT solutions must, first and foremost, take into account the particular needs of the consumer, rather than the needs of the physician, the insurance company, or some other entity that has a stake in the patient’s health care.

“To ensure broad access to these solutions, developers will also need to consider the particular needs, goals, preferences, and capacities of subpopulations like the elderly, the chronically ill, the disabled, and the underserved, which typically face one or more barriers that interfere with their ability or willingness to use consumer health IT systems. Specific barriers may include access to, and comfort with, technology; cognitive and physical impairments; health literacy; and cost. Until the needs of these subpopulations, who likely pose the most challenging design considerations, are taken into account, the IT solutions that developers create will likely fall short of promoting patient-centered care.

“Consistent with the principles of patient-centered care, these tools must also reflect respect for the patient. Specifically, these tools should, among other things, ensure that the patient decides who has access to his or her personal health information, and, for those tools that are interactive, they should communicate information to the patient in a way that the patient can easily understand.

“In order to ensure that consumers will actually use consumer health IT solutions, it will also be important to design those solutions to fit seamlessly into the user’s life.”

Important Steps for the Advancement of Consumer Health IT
“Workshop participants identified several steps that can be taken to promote innovation in consumer health IT. Key points included:

“Build a knowledge base about consumers’ PHIM needs and practices and related design principles. Additional research is needed on consumers’ PHIM practices and related design issues in order to develop consumer health interventions that can best support consumers in effectively managing their health and health-related information.

“Support more interdisciplinary efforts to drive innovation. Collaboration between academic institutions and the technology industry could lead to significant advances in consumer health IT, but too many factors prevent the two types of entities from working together. Within the technology industry, information sharing could potentially lead to better, more efficient designs, yet developers tend to avoid such alliances out of concern for the potential costs and risks of collaborative efforts. To facilitate more partnerships across and within academia and industry, mechanisms will need to be established that reward collaboration and protect the rights and investments of all stakeholders.

“Build a more robust health IT infrastructure to ensure access to all health care consumers. Innovations in consumer health IT will require the development of a robust infrastructure that can support the dissemination of new solutions across different platforms. This infrastructure will need to ensure that consumers have access to the technology regardless of their age, income, literacy level, or other potential barriers.”

Recommendations

A. Research
1. User Needs and Context
     Recommendation 1a:
“To inform the design of PHIM tools, technologies, and applications, research is needed to investigate: The needs and preferences of diverse user groups in different contexts., User goals, activities, and PHIM practices. User capacities (e.g., cognitive, physical, health literacy). User motivation (including beliefs and preferences).

     Recommendation 1b: “To address current gaps in knowledge, researchers should develop a taxonomy of needs and users that can be mapped to design strategies

     Recommendation 1c: “To inform the design of IT-based PHIM tools for the broader population, researchers should identify and study “expert‖ consumer groups (e.g., frequent health care consumers) as models.”

2. Improving Design of Consumer Health IT
“To improve consumer health IT design, researchers should:
     Recommendation 2a: “Investigate the application of design methodologies used in other industries to PHIM.

     Recommendation 2b: “Identify qualitative and quantitative metrics for evaluating good design.

     Recommendation 2c: “Test design feasibility before development.

     Recommendation 2d: “Identify and evaluate intervention strategies that encourage and facilitate adoption of consumer health IT among users.”

3. Evaluation Research
     Recommendation 3a:
“Rigorous research is needed to examine the impact of consumer health IT use on various outcomes (including behavioral, clinical, patient experience, provider experience, efficiency, and unanticipated outcomes), and the specific relationship of design to those outcomes.

     Recommendation 3b: “New research methods and approaches need to be developed to evaluate PHIM systems that are already in the field.”

B. Industry and Policy
     Recommendation 1:
“To advance the development of innovative consumer health IT solutions, new mechanisms need to be established that can facilitate collaboration between industry and academia.

     Recommendation 2: “To help support the development of consumer health IT solutions that meet the needs of all consumers, incentives should be established for industry to invest more resources in Research & Development of such solutions.

     Recommendation 3: “To build awareness about PHIM among young health care consumers, grade-appropriate PHIM education should be incorporated into school curricula.

     Recommendation 4: “Policymakers and industry stakeholders should agree upon and establish standard ethical guidelines for the use and reuse of personal health information.

     Recommendation 5: “To promote the development and adoption of consumer health IT, new and existing policy implications need to be evaluated.

     Recommendation 6: “To enable patient-centered care and ensure broad access to consumer health IT, policymakers and industry stakeholders need to identify ways to build a more robust health IT infrastructure.”

Related AHRQ Reports from October 2009
New AHRQ-Funded Reports on the Usability of Electronic Health Record (EHR) Systems”

“To explore the opportunity to improve EHR system usability, AHRQ commissioned the creation of two reports that synthesize the existing research and evidence in this area and suggest common methods to evaluate EHR usability going forward.

Electronic Health Record Usability: Evaluation and Use Case Framework (pdf) synthesizes the literature and best practices regarding the usability of EHRs, and it provides a set of use cases to evaluate information design in primary care IT systems.

“Electronic Health Record Usability: Interface Design Considerations provides recommended actions to support the development of an objective EHR usability evidence base and formative policies to systematically improve the usability of EHR systems.”