Why you should use this website…

After working for over fourteen years in community-based advocacy organizations, and then for seven years in health policy philanthropy, I have been privileged to be a resource for many people on many issues. There is a “database” of knowledge in my head which has been collected through the great working relationships I have been fortunate to develop, as well as the opportunities I have had to access, read, digest, disseminate, fund, and write articles and publications.

And through over 350 presentations (and counting!) at conferences, workshops, seminars, and trainings over the past 30 years, I have tried to share the resources, analyses, and contacts that are in my head with others, often accompanied by multi-page lists of references and citations.  During the past four years that I have been working as a independent consultant, I have continued to identify and provide those resources and references for my organizational clients.

This website uses technology to share what is in my head, in those presentations, and in those reference lists as virtual, real-time, open-source resources for those of you who might find them useful.  I invite your commentary and analyses on these resources, much like a continuously updated annotated bibliography.

I also hope that this website becomes a platform for the best in social networking – where those of us with common interests, questions, and critiques can connect, probe, push, and work together to advance these issues which I care so much about.

Please give me your comments, feedback, criticisms, and suggestions – and join me – in my technology-enabled journey forward towards greater patient-centeredness and equity…

Ignatius

Posted in The iBau Blog | Leave a comment

Resources to Advance Patient-Centeredness and Health Equity

I have compiled key publications and resources on some current topics in health care policy.  Below are descriptions of the key topic areas, which also can be accessed using the menu on the right side of this page.

Health Care Reform: Opportunities to Advance Patient-Centeredness and Equity

With the historic enactment of national health care reform in March 2010, it can be a little overwhelming to understand all the details and implications of this huge structural shift in national health care policy.

As I continue to refine my own knowledge and understanding of the national health care reform law, I will share my analyses and presentations here.  I will be highlighting what I call the “patient-centeredness” and “equity” elements of the legislation, two of the components of health care quality identified by the Institute of Medicine.

Text of Patient Protection and Affordable Care Act, as amended by the Health Care and Education Reconciliation Act

Side-by Side Analysis of Equity Provisions in Final Senate and House Bills

California Pan-Ethnic Health Network Bulletin, Advancing Patient-Centeredness and Equity in Health Care Reform, July 2010

Plenary Presentation at California Pan-Ethnic Health Network “Building Quality and Equitable Health Care Systems”, June 2010

The federal government health care reform implementation website also has useful information and is available in Español (Spanish).

I also have compiled some of the publications and resources that I have found most useful in understanding the Patient Protection and Affordable Care Act.

Kaiser Family Foundation Summary of PPACA

Kaiser Family Foundation PPACA Implementation Timeline

Joint Center for Political and Economic Studies Advancing Health Equity for Racially and Ethnically Diverse Populations

Summit Health Institute for Research and Education Health Equity Activist Guide to the PPACA

Finally, I am compiling publications and resources on some of the key topics and issues emerging from the implementation of health care reform:

Medical Homes

Accountable Care Organizations

Comparative Effectiveness Research

Medical Homes: A Promising Model for Advancing Patient-Centeredness and Equity

One of the emerging models of health care delivery system re-design is the concept of a “medical home”.   In 2007, the American Academy of Family Practice, American Academy of Pediatrics, American College of Physicians and American Osteopathic Association issued a Joint Principles defining patient-centered medical homes.

While the specific terminology and elements of a medical home (also being called a “health care home”, “primary care home” or “advanced primary care practice”) vary, the core idea is that everyone should have a partnership with a primary care provider who will provide access to comprehensive, coordinated, high quality health care.

Medical homes will be given a huge catalyst with the imminent widespread adoption of health information technology by physician practices, community health centers and hospitals.

I have compiled some key analyses and background resources on the concept of medical homes.

Robert Wood Johnson Foundation – Health Affairs Policy Brief on Medical Homes

Deloitte Health Care Solutions Issue Briefs on Medical Homes and “Medical Homes 2.0

Center for Studying Health System Change Issue Brief on Medical Homes

Mathematica Issue Brief on Medical Homes

National Academy for State Health Policy Issue Brief on Medical Homes

The California Endowment Resource Guide on Health Homes

National Partnership for Women and Families Consumer Principles for Medical Homes

Some key articles are:

Berenson RA, et al.  “A house is not a home: Keeping patients at the center of practice redesign.” Health Affairs (2008); 27(5):1219-1230

Pham HH.  “Good neighbors: How will the patient-centered medical home relate to the rest of the healthcare delivery system?”  J Gen Intern Med (2010); 25(6):630-634

Merrell K and Berenson RA.  “Structuring payment for medical homes.”  Health Affairs(2010); 29(5):852-858

Several organizations are developing standards for recognizing or qualifying medical homes, including the National Committee for Quality AssuranceURAC and The Joint Commission.

There have been many medical home demonstration projects, many coordinated by the Patient-Centered Primary Care Collaborative.  The Centers for Medicare and Medicaid Services is beginning a national multi-payer advance primary care demonstration project.

The next National Medical Home Summit will be March 14-16 in Philadelphia, PA.

Accountable Care Organizations: Experimenting with Payment Reform

One of the most interesting concepts which is being promoted in the national health care reform legislation are “accountable care organizations” (ACO) – new or existing health care organizations which would assume responsibility (“accountability”) for improving the health outcomes of a defined number of patients (at least 5,000) in a specific geographic area.  The ACO  would be required to engage a sufficient percentage of the local providers (hospitals, physicians, community health centers, etc.) so that it could establish appropriate goals for quality outcomes and then take the cost savings from that quality improvement (for example, reduced number of avoidable hospitalizations) and distribute those savings among all the providers.

What is somewhat surprising about the degree of support and interest in the concept is that this is still largely an idea based on cost analyses and savings projections from Medicare claims data, with little practical evidence that it actually works to sufficiently change the current cost and payment incentives in our health care system.  Moreover, while not excluding the ability of a hospital/health system, independent practice association or health plan to be a local ACO, the model contemplates a new type of administrative organization solely focused on these issues of quality improvement and shared cost savings.  Finally, there are many actuarial, measurement and legal issues to overcome to make this concept viable.

The “thought leaders” who have developed the concept of an accountable care organization are Mark McClellan, former Administrator of the Centers for Medicare and Medicaid Services and now at the Engleberg Center for Health Care Reform at the Brookings Institution and Elliot Fisher of Dartmouth Medical School.  They have created a learning network with useful tools for developing an ACO.

Some of the best analyses of accountable care organizations have been published by:

Robert Wood Johnson Foundation – Health Affairs Policy Brief on Accountable Care Organizations

Urban Institute Policy Brief on Accountable Care Organizations

Deloitte Center for Health Care Solutions Policy Brief on Accountable Care Organizations

National Academies of Practice Policy Paper on Accountable Care Organizations

Key articles are:

Fisher ES, et al.  “Fostering accountable health care: Moving forward in Medicare.”Health Affairs (2009); 28(2):w219-w231

McClellan M, et al.  “A national strategy to put accountable care into practice.”Health Affairs (2010); 29(5):982-990

National Accountable Care Organization Congress is being held on October 25-27, 2010 in Century City, California.

Comparative Effectiveness Research: Improving Quality and Containing Costs

One the more controversial concepts in contemporary health care policy is comparative effectiveness research (CER).  This research attempts to directly compare the effectiveness of different treatments and interventions for various diagnoses and conditions.  For example, when a woman is diagnosed with breast cancer, what is her best choice for treatment – surgery, chemotherapy, radiation, or a combination of all three?  In what sequence and what dosage?  The attention to comparative effectiveness research was significantly raised when $1.1 billion was made available to support CER in the American Recovery and Reinvestment Act.

The concern is that this research will be used to deny coverage or payment for certain treatments or interventions, or otherwise “ration” health care services.  Accordingly, the Patient Protection and Affordable Care Act no longer used the term “comparative effectiveness research” and instead established the Patient-Centered Outcomes Research Institute.

I have compiled some key background documents on the $1.1 billion being invested in CER as well as some policy analyses of what implications comparative effectiveness research might have for health care quality improvement and cost containment.

Institute of Medicine National Priorities for Comparative Effectiveness Research

National Institutes of Health Comparative Effective Research

Agency for Healthcare Quality Comparative Effectiveness Research

Office of the Secretary Comparative Effectiveness Research

Robert Wood Johnson Foundation – Health Affairs Policy Brief on Comparative Effectiveness Research

Kaiser Family Foundation Issue Brief on Comparative Effectiveness Research

Institute for Health Care Reform Policy Analysis on Comparative Effectiveness Research

Mathematica Issue Brief on Comparative Effectiveness Research

The October 2010 edition of Health Affairs is focused on comparative effectiveness research.  Among the key articles:

Patel K. “Health reform’s tortuous route to the Patient-Centered Outcomes Research Institute.” Health Affairs (2010); 29(10): 1777-1782

Garber AM and Sox HC.  “The role of costs in comparative effectiveness research.  Health Affairs (2010); 29(10): 1805-1811

Health Information Technology: Advancing Patient-Centeredness and Equity through Technology

The other major health care policy legislation enacted within the past two years is the Health Information Technology for Economic and Clinical Health (HITECH) Act, which was part of the economic stimulus legislation, the American Recovery and Reinvestment Act.  The HITECH Act provides up to $30 billion to hospitals, physicians, community health centers and other “eligible providers”.  The federal funds will be available through incentive payments paid through Medicare and Medicaid.  Hospitals and physicians must demonstrate “meaningful use of certified electronic health records” to qualify for the incentive payments.  The Office of National Coordinator for Health Information Technology is overseeing most of the implementation of the HITECH Act, in collaboration with the Centers for Medicare and Medicaid Services, which is overseeing the Medicare and Medicaid incentive payments.

I have compiled some key resources on the implementation of the HITECH Act, with a focus on how it might impact safety net health care providers, and patients and health care consumers, especially from underserved communities.

The best overview of the HITECH Act was published by the California HealthCare Foundation.  Manatt Health Solutions recently published an insightful “one year after enactment” review of the implementation of the HITECH Act.  Other useful resources include:

Robert Wood Johnson Foundation – Health Affairs Policy Brief on Meaningful Use

National Partnership for Women and Children Consumer Benefits from Meaningful Use

I have been most interested in how the implementation and utilization of health information (and communications) technologies can advance patient-centeredness and equity.

Here is my presentation on the HITECH Act for the National HIT Collaborative for the Underserved and a bulletin I authored, published by the California Pan-Ethnic Health Network on these issues.

And here are some useful resources for understanding how patients and consumers, particularly from communities of color and other underserved populations, could benefit from health information and communications technologies:

Pew Internet Project on Digital Divide

California HealthCare Foundation 2010 Consumer Survey

California HealthCare Foundation: How Smartphones are Changing Health Care

California HealthCare Foundation: Creating EHR Networks in the Safety Net

One of the concepts I have been promoting is the process of identifying the specific issues or needs for underserved populations – for example, the need for tailored, adaptable patient education materials in multiple languages and formats – and then developing and implementing “universal” solutions that benefit everyone – for example, the ability to archive and access multiple versions of patient education materials from an electronic health record system.  This would mean educational materials about asthma care would be available electronically from an electronic health record system in English, Spanish, Chinese and Vietnamese, at a literacy level usable by patients and families with lower health literacy in each of those languages, and could be printed in a large fonts for persons who would benefit from increased readability.

There are many useful articles that have been published about the implementation of the HITECH Act:

Brailer DJ.  “Guiding the health information technology agenda.”  Health Affairs (2010); 29(4): 586-595

Bates DW and Bitton A. “The future of health information technology in the patient-centered medical homes.”  Health Affairs (2010); 29(4): 614–621

Tang PC and Lansky D.  “The missing link: bridging the patient-provider health information gap.” Health Affairs. (2005);24(5):1290-1295.

Torda P, Han ES and Scholle SH.  Easing the adoption and use of electronic health records in small practices.” Health Affairs (2010); 29(4): 668–675

Miller RH , et al. “The value of electronic health records in solo or small group practices.”
Health Affairs, (2005); 24(5): 1127-1137

Lee J , et al.  “The adoption gap: Health information technology in small physician practices.”  Health Affairs, (2005); 24(5): 1364-1366

Miller RH and West CE.  “The value of electronic health records in community health centers: Policy implications.”  Health Affairs,(2007); 26(1): 206-214

Shields AE, et al.  “Adoption of health information technology in community health centers: Results of a national survey.”  Health Affairs (2007); 26(5): 1373-1383

Millery M and Kukafka R.  “Health information technology and quality of health care: Strategies for reducing disparities in underresourced settings.” Med Care Res Rev.(2010) Jul 30. [Epub ahead of print]

Baig AA, et al. “The use of quality improvement and health information technology approaches to improve diabetes outcomes in African American and Hispanic patients.  Med Care Res Rev. (2010) Jul 30. [Epub ahead of print]

Ngo-Metzger Q, et al.  “Improving communication between patients and providers using health information technology and other quality improvement strategies: Focus on Asian Americans.” Med Care Res Rev. (2010) Jul 30. [Epub ahead of print]

I will continue to add more content on sub-topics for this huge change in health care delivery in the U.S., as well as catalog and comment on additional resources as they become available.

Demographic Data: The Baseline for Advancing Equity

Collecting data from patients about their income, education, race, ethnicity, language, sexual orientation, gender identity and expression, health literacy and other demographic information will enable health care providers and systems to better understand individual patient needs as well as identify and address disparities at a population level.

Institute of Medicine Report: Standardization of Race, Ethnicity and Language Data

Hospitals, health plans and physician practices are all beginning to collect more data on patient demographics.

Health Research and Education Trust: Toolkit for Collecting Race, Ethnicity and Primary Language Data

America’s Health Insurance Plans: Toolkit for Race, Ethnicity and Primary Language Data Collection

The meaningful use requirements for Medicare and Medicaid incentive payments under the Health Information will require hospitals and physicians to collect race, ethnicity and language data on at least 50 percent of their unique patients.  These requirements will further stimulate data collection activities over the next few years.

Meanwhile, it is important to consider other demographic data which could identify disparities for other underserved populations.  For example, there is recent discussion about how best to collect data about sexual orientation and gender identity/expression to improve the quality of health care for lesbian, gay, bisexual and transgender patients and their families.

National Coalition for LGBT Health Issue Brief on Data Collection

University of California San Francisco Center of Excellence for Transgender HIV Prevention Recommendations for Inclusive Data Collection from Transgender Individuals

Language Access: Ensuring Meaningful Access to Health Care

There is a growing body of evidence that language barriers for individuals with limited English proficiency has a direct relationship to the quality of health care. Providing language assistance services can improve the quality of care and reduce health care disparities among individuals with limited English proficiency.  Language assistance services include both verbal interpretation services and written translation services.

National Council on Interpreting in Health Care Searchable Annotated Bibliography on Language Access

With funding from the Robert Wood Johnson Foundation, a special November 2007 supplement of the Journal of General Internal Medicine is focused on language access issues, with open access to all the articles.

There are many useful resources that can help support the many reasons for improving language access, including legal and regulatory requirements, patient safety, risk management, quality improvement and disparities reduction.

Here is my presentation on how to make the multiple “cases” for language access.

There are important background resources which support the legal and regulatory requirements for language access that apply to all health care providers that receive any type or amount of federal funding (almost all health care providers):

Title VI of the 1964 Civil Rights Act Requires Language Access

U.S. Department of Health and Human Services Title VI Guidance on Language Access

U.S. Department of Health and Human Services Office of Minority Health National Standards for Culturally and Linguistically Appropriate Services

There is growing evidence for other reasons for ensuring language access:

Joint Commission Article: Language Proficiency and Adverse Events

National Health Law Program: High Cost of Language Barriers in Medical Malpractice

Hospitals, health plans, community health centers and physician office practices have all demonstrated the feasibility and importance of ensuring language access:

Joint Commission Report: Hospitals, Language and Culture

Joint Commission Report: One Size Does Not Fit All

Joint Commission Report: Roadmap for Effective Communication, Cultural Competency and Patient- and Family-Centered Care

George Washington University: How Hospitals Use Bilingual Clinicians and Staff

Northwestern University: Facilitators and Barriers to Providing Language Services in California Public Hospitals

Robert Wood Johnson Foundation Speaking Together Program

California Health Care Safety Net Institute Model Hospital Policies and Procedures on Language Access

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2009

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2008

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2007

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2006

National Association of Community Health Centers: Serving Patients with Limited English Proficiency

Association of Clinicians for the Underserved: Language Access – Understanding the Barriers and Challenges in Primary Care Settings

National Health Law Program: Language Access in Small Provider Settings

The National Council on Interpreting in Health Care has developed a Code of Ethics and Standards of Practice for health care interpreters.

And a national program for the certification of health care interpreters has been created by the Certification Commission for Healthcare Interpreters, which is conducting its first test cycle in October and November 2010.

Finally, here are some publications which explain how federal matching funds from Medicaid and the Children’s Health Insurance Program can be used by states to reimburse health care providers for language assistance services.

National Health Law Program: How States Can Get Federal Funding for Language Assistance Services

National Health Law Program: Medicaid and Children’s Health Insurance Program Reimbursement for Language Assistance Services

Center for Budget and Policy Priorities Medicare Payment for Language Services

Cultural Competency: Customizing Health Care for Diverse Patients

The Institute of Medicine identified patient-centeredness as one of the elements of quality health care.  The definition of patient-centeredness includes responsiveness to the needs and preferences of the patient.  There is a conceptual overlap between patient-centeredness and cultural competence:

The Commonwealth Fund Cultural Competency Report: Cultural Competency and Patient-Centered Care

Joint Commission Report: Roadmap for Effective Communication, Cultural Competency and Patient- and Family-Centered Care

There are many useful frameworks and resources for understanding and applying cultural competency in health care:

U.S. Department of Health and Human Services Office of Minority Health National Standards for Culturally and Linguistically Appropriate Services

National Quality Forum Framework for Cultural Competency

Health Resources and Services Administration Organizational Cultural Competence Assessment

Management Sciences for Health Provider’s Guide to Quality and Culture

Georgetown University National Center for Cultural Competence

Many health care organizations are integrating concepts of cultural competency into their quality improvement and disparities reduction activities:

The California Endowment Report: Building Culturally Competent Health Systems

Encouraging Cultural and Linguistic Competent Practices in Mainstream Health Organizations

Health professions education and training programs also are integrating cultural competency into their curricula:

Association of American Medical Colleges: Cultural Competency Education

The May 2010 Supplement 2 to the Journal of General Internal Medicine is focused on cultural competency and health disparities issues in medical education – all the articles in the issue are available through open access (scroll down to bottom of right side of page)

American Association of Colleges of Nursing: Cultural Competency in Baccalaureate and in Master’s and Doctoral Nursing Education

California Dental Pipeline Program Toolkit for Treating Culturally Diverse Patients

California Assembly Bill 1195 Requires Cultural and Linguistic Competency Content in Continuing Medical Education

Institute for Medical Quality CME Resources on Cultural and Linguistic Competency

Health Care Disparities: A Continuing National Challenge

There is now overwhelming, irrefutable evidence of health care disparities in the U.S.:

Institute of Medicine Report: Unequal Treatment – Confronting Racial and Ethnic Disparities in Health Care

National Healthcare Disparities Report 2009

Fortunately, many health care organizations have recognized the persistence of health care disparities and have begun to develop and implement interventions to reduce those disparities:

U.S. Department of Health and Human Services Office of Minority Health Draft National Plan of Action

National Quality Forum Disparities-Sensitive Ambulatory Health Care Quality Measures

National Health Plan Collaborative: Toolkit on Reducing Disparities

Center for Healthcare Strategies: Toolkit for Reducing Racial and Ethnic Health Care Disparities for Medicaid Managed Care Plans

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2009

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2008

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2007

National Committee for Quality Assurance Innovative Practices in Multicultural Health Care 2006

National Public Health and Hospital Institute: Assuring Healthcare Equity

American Medical Association Activities on Health Disparities

Center for Studying Health System Change: Physician Efforts to Reduce Disparities

Mathematica Policy Brief: Partnerships between Employers and Health Plans to Reduce Health Care Disparities

National Business Group on Health: Why Companies are Making Health Disparities Their Business

Health Workforce Diversity: The Quality and Economic Imperatives

Given the historic discrimination against African Americans, American Indians and other racial and ethnic minorities and their exclusion from the health professions in this country, it remains a national challenge to diversify the racial and ethnic background of students entering the health professions. While almost all of the business world recognizes the value and benefits of workforce diversity, there is still strong resistance within admissions committees and faculties of health professions educational institutions to changing traditional admissions criteria (grades and standardized test scores) to account for the qualities of the “whole person” that would make a student a successful health professional.

As our nation’s health care systems undergo continued reform, there is also growing maldistribution of health professionals, both geographically as well as type of practice and specialization.   There are chronic and increasing shortages of health professionals for rural and urban underserved areas, especially in primary care.   These shortages will only be exacerbated by the increased demand for health care services as the previously millions of uninsured and underinsured Americans obtain health care coverage under national health care reform and begin to seek their own regular providers of health care.

Finally, as models of health care delivery move toward more patient-centered and team-based approaches such as medical homes, physicians and other clinicians will need to be more than knowledgeable, technically proficient providers of procedures, medications and medical devices.  The abilities to manage and supervise teams, to conduct motivational interviewing, to engage in care management and support behavior change, and to effectively communicate with and coordinate care with other providers, patients, families and caregivers will become more and more important skills.  Having more diverse providers reflective of the patient populations served who can build rapport and trust with patients will be essential.

Here are some key background resources on the imperative for health workforce diversity:

Institute of Medicine Report: In the Nation’s Compelling Interest

Sullivan Commission Report: Missing Persons – Minorities in the Health Professions

American Medical Association Apology to Black Physicians

Association of  American Medical Colleges Diversity Initiatives

American Association of Colleges of Nursing Diversity in Nursing Education Resource Center

Connecting the Dots Initiative in California

University of California San Francisco: Strategies for Increasing the Diversity of the Health Professions

Lesbian, Gay, Bisexual and Transgender Health Issues

Lesbian, gay, bisexual and transgender individuals and communities have largely been overlooked by health care systems and providers.  Unfortunately, there is evidence that many lesbian, gay, bisexual and transgender patients and health care consumers continue to experience discrimination and exclusion from health care services, and also experience disparities in health care and outcomes.

Healthy People 2010 Companion Document on Lesbian, Gay, Bisexual and Transgender Health

Presidential Memorandum on Respecting the Rights of Hospital Patients

Human Rights Campaign Foundation Health Equality Index

National Coalition for LGBT Health Issue Brief on Health Disparities

Center for American Progress Issue Brief on LGBT Health Disparities

Similar to many underserved populations and communities, one of the central issues for improving the health care for lesbian, gay, bisexual and transgender individuals is demographic data collection – being able to voluntarily and safely identify as lesbian, gay, bisexual and transgender to one’s health care provider, or on a health survey.

National Coalition for LGBT Health Issue Brief on Data Collection

University of California San Francisco Center of Excellence for Transgender HIV Prevention Recommendations for Inclusive Data Collection from Transgender Individuals

National Coalition for LGBT Health Issue Brief on Inclusion in Federal Health Surveys

In addition, there are important issues of providing clinically appropriate care for lesbian, gay, bisexual and transgender patients and health care consumers, cultural competency training and workforce development.

AHRQ Innovations Exchange on Culturally Competent Care for Lesbian, Gay, Bisexual and Transgender Patients

Gay and Lesbian Medical Association Guidelines for the Care of Lesbian, Gay, Bisexual and Transgender Patients

National Coalition for LGBT Health Guiding Principles for Inclusion in Health Care

Joint Commission Report: Roadmap for Effective Communication, Cultural Competency and Patient- and Family-Centered Care

National Coalition for LGBT Health Issue Brief on Health Care Workforce

National Coalition for LGBT Health Issue Brief on Cultural Competency

Improving health care for lesbian, gay, bisexual and transgender patients and their families is another important step towards patient-centered and equitable health care for all.

Patient-Centeredness: The Promise of Quality and a Pathway to Equity

One of the six components of quality health care identified by the Institute of Medicine is patient-centeredness.  While there has been significant attention on the components of safety, timeliness, effectiveness, efficiency, there has been less attention on the components of equity and patient-centeredness.

I have begun to use patient-centeredness as a key concept to drive change and improvement in our health care systems, as well as a pathway to health equity.  To me, patient-centeredness means providing the best care to all patients at all times, based on their individual, contextualized needs and preferences.  It means customizing and tailoring health care and services for diverse individuals while expecting and achieving the same (highest) quality outcomes for everyone.  If we can really transform our current health care systems into more patient-centered ones where patients really are more engaged as partners in their own health care and their own health, we are likely to see quality improvement, reduction of health care disparities, more engaged clinicians and health care providers, and patients and health care consumers with greatly improved experiences of health care.

Here are some key resources on patient-centeredness:

Institute of Medicine Workshop on Equality and Patient-Centeredness

Joint Commission Report: Roadmap for Effective Communication, Cultural Competency and Patient- and Family-Centered Care

Institute for Family-Centered Care: Partnering with Patients and Families to Create a Patient- and Family Centered Health Care System

Economic and Social Research Institute: Patient-Centered Care for Underserved Populations

Some key articles on the concept of patient-centeredness are:

Epstein RM, Fiscella K , Lesser CS Stange KC.  “Why the nation needs a policy push on patient-centered health care.”  Health Affairs (2010); 29(8):1489-1495

Bechtel C and Ness DL. “If you build it, will they come? Designing truly patient-centered health care.” Health Affairs (2010); 29(5):914-920

Berwick DM. “What ‘patient-centered’ should mean: Confessions of an extremist.” Health Affairs (2009); 28(4):w555-w565

Davis KA, et al.  “A 2020 vision of patient-centered primary care,” J Gen Int Med (2005); 20 (10): 953-957

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Office of National Coordinator for Health Information Technology: Draft Shared Nationwide Interoperability Roadmap

The Office of National Coordinator for Health Information Technology (ONC) has released this draft Connecting Health and Care for the Nation: A Shared Nationwide Interoperability Roadmap for public comment.  The draft Roadmap builds on its vision paper, Connecting Health and Care for the Nation: A 10-Year Vision to Achieve an Interoperable Health IT Infrastructure, issued in June 2014.   The draft identifies the following core set of building blocks that are needed to achieve interoperability:

  1. Core technical standards and functions;
  2. Certification to support adoption and optimization of health IT products and services;
  3. Privacy and security protections for health information;
  4. Supportive business, clinical, cultural, and regulatory environments; and
  5. Rules of engagement and governance.

According to the draft Roadmap, as a first step, ONC will identify the best available technical standards for core interoperability functions, working through its Standards Committee.

Public comments on the draft may be submitted online to ONC by April 3, 2015.

Link to Original Source

ONC also released an infographic that highlights the 3 year, 6 year, and 10 year goals in the draft roadmap.

Link to Original Source

 

 

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Office of National Coordinator for Health Information Technology: Vision and Draft Roadmap for Nationwide Interoperability

In June 2014, the Office of National Coordinator for Health Information Technology published this “vision” for nationwide interoperability of health information technology over the next ten years.  The vision paper is still very general (more “guiding principles”, with very broad 3-year, 6-year, and 10-year goals) and does not have the type of specificity of actions, priorities, and milestones called for in the March 2014 General Accountability Office (GAO) report, or the focus on supporting application program interfaces (APIs) called for in the April 2014 JASON report.  The “strategy” in the vision paper is still very general, described as “building blocks for a nationwide interoperable health information infrastructure”:

  • Core technical standards and functions
  • Certification to support adoption and optimization of health IT products and services
  • Privacy and security protections for health information
  • Supportive business, clinical, cultural, and regulatory environments
  • Rules of engagement and governance

Link to Original Source

At the October 2014 ONC Policy Committee, ONC staff presented on what will become a draft “Roadmap for Nationwide Interoperability”.   The initial ideas presented by ONC do contain the types of specific actions and milestones called for in the GAO report. The initial ideas do incorporate an AP-based strategy, but are more aligned with the joint ONC JASON task force recommendations than the JASON report recommendations.

Link to Original Source

The Roadmap is expected to be published for public comment in January 2015, with finalization by March 2015.

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Office of National Coordinator for Health IT Policy and Standards Committees: Response to JASON Report

After the publication of the JASON report, the Policy Committee and the Standards Committee of the Office of National Coordinator for Health Information Technology convened a task force to respond to the report.  In October 2014, this joint task force published its response.  The task force fundamentally agreed with the JASON report that an application program interface (API)-based strategy for interoperability is needed, and that Meaningful Use Stage 3 requirements should have an increased focus on interoperability. However, the task force disagreed with the JASON report about the degree of progress that has currently been made towards interoperability, and highlighted policy, legal, governance, and business issues with adopting an API-based strategy. The task force also noted that the JASON report recommends a top-down regulatory approach (while failing to identify the regulatory authority to mandate such an approach), while the task force still supports a market demand approach (where the current market demand for interoperability is still weak).

The task force made specific recommendations to ONC and CMS to begin to implement a modified API-based strategy, working within existing committees and regulatory processes, including Meaningful Use Stage 3 requirements. The task force described this strategy as “coordinated architecture [i.e., the JASON report’s call for a national API-based strategy] that loosely couples market-based data sharing networks” (i.e, existing health information exchanges).

The specific recommendation that caught the most attention and discussion by the members of ONC Policy and Standards Committee was “the potential need for delay or staggering of MU Stage 3 incentives, to account for the time needed to standardize and then implement the Core Data Services of the Public API.”  After discussion, this wording was amended to recommend that “CMS and ONC should consider mechanisms to accommodate an accelerated process for a feasible initial public API specification.”

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JASON: A Robust Health Data Infrastructure

This report was issued by JASON, an independent group of scientists that periodically advise the federal government on issues of science and technology.   The report was commissioned by the Office of National Coordinator for Health Information Technology and the Agency for Healthcare Research and Quality.

The JASON report called for increased federal attention to health data interoperability through support of a software architecture strategy, or third-party application program interfaces (APIs) that would bridge and exchange data within current electronic health record (EHR) systems. The report outlines principles for such API-based interoperability:

  • Use public APIs and open standards, interfaces, and protocols
  • Be agnostic as the type, scale, platform, and storage location of the data
  • Encrypt data at rest and in transit
  • Separate cryptographic key management from data management
  • Include with the data the corresponding metadata, context, and provenace (chain of custody)information
  • Address migration pathways needed from legacy EHR systems

The JASON report also is explicit in its patient-consumer-centric approach: “[t]he software architecture that JASON proposes adopts the principle that the ultimate owner of a given health care record is the patient him/herself.” Through identification, authorization, and privacy services, both the patient and the patient’s providers would make privacy and access choices down to an “atomic data element” level. For example, the report suggests that there could be standardized “patient privacy bundles” that reflect patient options for levels of permissions and authorizations. By shifting the control of health information from current EHR vendors to a more open software-driven “ecosystem” with a diversity of products and “apps” created for use both by patients and providers, improved functionality and convenience will drive the health information exchange marketplace. In other words, the focus of market forces will shift from who controls (and maintains control over) health information data to how that data is useful, and actually used.

In terms of infrastructure, the JASON report bluntly concludes: “[a] sustainable business model for HIEs [organizations that oversee and loosely govern the exchange of electronic health information] remains to be established.” The JASON report also is critical of ONC’s strategy to support harmonization and standardization of what it calls “common mark-up language for storing electronic health records”, rather than the API strategy JASON recommends.

The JASON report also calls for a balance between privacy of individual level data with the “public interest” use of population level data for clinical practice improvement and biomedical research.  Moreover, the JASON report calls for health information exchange to incorporate genomic and patient-generated/reported data. The report also warns about the risk of re-identifying or deciphering de-identified data, and calls instead for a national unique patient identifier system.

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General Accountability Office: Electronic Health Records – HHS Strategy to Address Information Exchange Challenges Lacks Specific Prioritized Actions and Milestones

This March 2014 report from the General Accountability Office (GAO) is critical of the U.S. Department of Health and Human Services (HHS) strategy to support nationwide health information exchange and interoperability.  Among the continuing barriers to health information exchange identified in the report are insufficient health data exchange standards, concerns about how privacy rules can vary among states, difficulties in matching patients to their records, and costs associated with exchanging data, including the costs of electronic health records themselves. The report noted that the August 2013 Office of National Coordinator for Health Information Technology (ONC) and Centers for Medicare and Medicaid Services (CMS) strategy to advance health information exchange only described principles to guide health information exchange, but did not include any specific actions, priorities, and milestones. That ONC-CMS strategy document itself acknowledged that “gaps and challenges still remain for the widespread use of interoperable systems and HIE across providers, settings of care, consumers and patients, and payers. Both providers and their vendors do not yet have a business imperative to electronically share person-level health information across providers and settings of care that exceeds the cost of doing so.” The GAO report called for specific actions, priorities, and milestones to be established by the ONC, CMS, and HHS as a whole, to make more progress on supporting health information exchange (and to be consistent with strategies for effective governmental planning and implementation of programs. In its written response, HHS concurred with the GAO report’s recommendations.

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Office of National Coordinator for Health Information Technology and Centers for Medicare and Medicaid Services: Principles and Strategy for Accelerating Health Information Exchange

In August 2013, the Office of National Coordinator for Health Information Technology (ONC) and the Centers for Medicare and Medicaid Services (CMS) published these principles and strategy for accelerating health information exchange.  The strategy document was ONC and CMS’ response to a joint Request for Information (RFI) about advancing interoperability and health information exchange they issued in March 2013.

Among the comments received in response to the RFI were recommendations for CMS to require health information exchange in its payment reform initiatives; incentives for electronic health record (EHR) adoption by providers not eligible for HITECH Act incentives, especially long-term, post-acute care, and behavioral health providers; CMS payments for telehealth, e-visits, care coordination, and other new care models that use EHRs; requiring EHR adoption as part of federal certification of health care facilities; additional ONC certification of both health information exchange and personal health records products, additional standardization of data elements required for health information exchange, including structured laboratory results; and alignment of federal and varied state privacy and confidentiality laws. The strategy document does not adopt any of these recommendations.

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Migration Policy Institute: Population Profiles on Unauthorized Immigrants

The Migration Policy Institute has published an online tool that provides state and  county-level data about the estimated 11.4 million unauthorized, or undocumented, immigrants residing in the United States.  Data is available for the 41 states and 94 counties with the largest number of unauthorized immigrants.  Data includes year of entry, countries of origin, levels of education, industries of employment, incomes, parental and marital status, and health care coverage.  For example, only 72% speak English less than “very well” and are likely to need language assistance services.  While most of these individuals who have primary languages other than English speak English (75%), the next most common languages are Hindi, Chinese, and Korean.  Up to 63% of these immigrants are uninsured.

The tool also provides estimates of the numbers of immigrants that could be eligible for the temporary, discretionary relief from deportation announced by President Barack Obama in November 2014.   Nationally, an estimated 3.7 million immigrants could be eligible for the Deferred Action for Parental Accountability program and an estimated 1.5 million immigrants could be eligible for the expanded Deferred Action for Childhood Arrivals program.

The data tool is based on a methodology that imputes unauthorized status using U.S. Census Bureau 2008-12 American Community Survey and 2008 Survey of Income and Program Participation data.

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Grantmakers in Health: Healing All Sons & Brothers – Addressing Gay, Bisexual, and Transgender Boys and Men of Color

Grantmakers in Health has published this issue focus on addressing the health, education, and employment needs of gay, bisexual, and transgender boys and men of color.  While several private and public funders have prioritized the needs of boys and men of color, few have explicitly addressed the specific needs of gay, bisexual, and transgender boys and men of color.  These needs include barriers to access to health care, disproportionate rates of HIV/AIDS (among young men who have sex with men diagnosed with HIV, 78% are African American or Latino), housing instability and homelessness, and unsafe and hostile school environments.  While some of these issues are experienced by all boys and men or color, or by all gay, bisexual, and transgender youth and adults, they are compounded for gay, bisexual, and transgender boys and men of color.

While there have been some examples of funder activities to address these needs, the issue focus recommends that health funders could do more to support the health and well-being of  gay, bisexual, and transgender boys and men of color by funding activities that:

  • Expand health access
  • Improve school climates
  • Increase research and awareness
  • Collaborate across issue areas

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California School-Based Health Alliance: Making the Health Home Model Work for Boys and Young Men of Color

This policy brief from the California School-Based Health Alliance and the California Pan-Ethnic Health Network describes how health homes can provide improved health care and related services to boys and young men of color.

The brief describes the disparities in health status and health care experienced by boys and young men of color.  National, state, and local health care reforms have promoted the concept of patient-centered medical homes, or health homes, as a model for re-focusing health care delivery systems on the needs of the individual patients.  This policy brief examines how the health home model can be effective in addressing the unique needs of boys and young men of color.   Health homes can provide a primary care provider and care team,  enhanced and timely access to care, appropriate and comprehensive care, quality care that is data-driven, and community integration and family engagement.

The brief recommends actions to ensure accountability to the boys and young men of color served, through focus groups, surveys, health assessments, analyses of data, and youth advisory boards.  The brief also describes some best practices in reaching and engaging boys and young men of color, and ensuring a culturally competent health workforce that meets their needs.  The brief highlights issues of trauma-informed care, integration of behavioral health services, male mentorship, family engagement, addressing concepts of masculinity, comprehensive case management, and support for gay, bisexual, and transgender youth as important elements of an effective health home for boys and young men of color.

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Agency for Healthcare Research and Quality: Request for Comments on Proposed Changes for Consumer Assessment of Healthcare Providers and Systems (CAHPS)

The Agency for Healthcare Research and Quality is seeking comments on proposed changes to the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey and the CAHPS Patient-Centered Medical Home (PCMH) item set.  Additional technical details about the proposed changes are available on the CAHPS website.  Comments may be submitted by email sent to: <CAHPS1@ westat.com>, with ‘‘CAHPS Proposed Changes’’ as the subject line, and are due by February 20, 2015.

The proposed changes to the core Clinician and Group Survey are:

  • Reduce the survey reference time from the last 12 months to the last 6 months
  • Reduce the access composite measure from 5 items to 3 items (“got urgent care appointment”, “got appointment for checkup or routine care”, and “got answer to medical question the same day”)
  • Reduce the communication composite measure from 6 items to 4 items (“explains things in a way that is easy to understand”, “listens carefully”, “shows respect for what you have to say”, and “spends enough time”)
  • Add a care coordination composite measure (uses two existing measures, “follow up on test results” and “knows important information about medical history”, plus “provider talked about all prescription medicines being taken from PCMH item set)

The proposed changes to the current 18-item PCMH item set are:

  • Delete three items on shared decisionmaking (moved to a general set of potential supplemental items)
  • Delete two items on attention to mental or emotional health (retains “things that cause worry or stress” and deletes “depression screening” and “personal or family problems”)
  • Deletes item on “getting care on evenings, weekends, and holidays”
  • Deletes item on “days wait for urgent care”
  • Deletes item on “reminders between visits”
  • Moves care coordination item “provider talked about all the prescription medicines being taken” to core survey and changes to a response frequency scale rather than a yes/no response; retains “provider informed and up-to-date on care from specialists” as a care coordination item in the PCMH item set

The 6 remaining questions in the PCMH item set would be:

  • Provider’s office gave you information about getting care on evenings, weekends, and holidays
  • Respondent saw a specialist (screener)
  • Provider seemed informed and up-to-date about the care you got from specialists
  • Someone in the provider’s office talked with you about specific goals for your health
  • Someone in the provider’s office talked with you about things that make it hard for you to take care of your health
  • Someone in the provider’s office talked with you about things in your life that worry you or cause you stress

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Here is the notice in the Federal Register requesting public comments:

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