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

Posted in Cultural Competency, Cultural Competency: Assessments, Cultural Competency: Curricula, Cultural Competency: Evaluation, Cultural Competency: Frameworks, Cultural Competency: Training, Demographic Data, Demographic Data: Gender Identity/Expression, Demographic Data: Language Need, Demographic Data: Race and Ethnicity, Demographic Data: Sexual Orientation, Health Care Disparities, Health Care Disparities: Effective Interventions, Health Care Disparities: Stakeholders Engaged, Health Care Disparities: The Evidence of Disparities, Health Care Reform, Health Care Reform: Accountable Care Organizations, Health Care Reform: Advancing Equity, Health Care Reform: Comparative Effectiveness Research, Health Care Reform: General Analysis, Health Care Reform: Medical Homes, Health Care Reform: Payment Reform, Health Care Reform: Quality Improvement, Health Care Reform: Workforce Development, Health Information Technology, Health Information Technology: Meaningful Use, Health Information Technology: Mobile Health, Health Information Technology: Personal Health Records, Health Literacy, Health Workforce Diversity, Health Workforce Diversity: Building the Demand Side, Health Workforce Diversity: Pipelines and pathways, Health Workforce Diversity: Who is Underrepresented, Language Access, Language Access: Best Practices, Language Access: Certification, Language Access: Government Funding, Language Access: Making the Case, Language Access: Standards, Lesbian, Gay, Bisexual and Transgender Health, Patient-Centeredness, The iBau Blog | Leave a comment

DHHS Office of Civil Rights: Letter on Consumer Right to Access Health Information

The U.S. Department of Health and Human Services Office of Civil Rights issued this letter in 2013 clarifying the right of health care consumers to view and receive copies of one’s personal health information, both in printed (copies) and electronic formats. The Office of Civil Rights is charged with the enforcement of the Health Information Portability and Accountability Act (HIPAA), which some health care providers interpret as a legal prohibition against sharing any personal health information.

The letter clarifies that health care consumers have the right to:

*Ask to see and get a copy of your health records from most doctors, hospitals, and other health care providers such as pharmacies and nursing homes, as well as from your health plan;
*Get either a paper or, if records are kept electronically, an electronic copy of your records; and
*Have your provider or health plan send a copy of your records to someone else.

Having clarity on this consumer right will facilitate consumer use of health information technology, especially patient-facing features of electronic health record systems. The clarification also should facilitate and encourage increased health information exchange among a individual consumer’s health care providers.

Link to Original Source

Posted in Health Information Technology, Health Information Technology: Meaningful Use, Health Information Technology: Personal Health Records | Leave a comment

National Health Interview Survey Publishes First Data on Sexual Orientation

The National Health Interview Survey (NHIS) has published analyses of its first data collected on the sexual orientation, based on 34,557 adult respondents surveyed in 2013. The question that was included in the NHIS for male respondents was:

Which of the following best represents how you think of yourself:
*Gay
*Straight, that is, not gay
*Bisexual
*Something else
*I don’t know the answer

For female respondents, the question was:

Which of the following best represents how you think of yourself:
*Lesbian or gay
*Straight, that is, not lesbian or gay
*Bisexual
*Something else
*I don’t know the answer

In 2013, 1.6% of the respondents to the NHIS identified as gay or lesbian, and 0.7% identified as bisexual, for a total of 2.3% who identified as gay, lesbian, or bisexual. Only 1.1% identified as “something else”, or responded “I don’t know the answer”, or refused to answer (0.6%). A higher percentage of men identified as gay (1.8%), compared to women who identified as lesbian or gay (1.5%). On the other hand, a higher percentage of women identified as bisexual (0.9%), compared to men who identified as bisexual (0.4%). Overall, 2.4% of the women identified as lesbian or gay, or bisexual, and 2.2% of the men identified as gay or bisexual.

One of the functions of the National Health Interview Survey is to provide national data to meet the U.S. Department of Health and Human Services’ Healthy People 2020 goal of improving the health, safety, and well-being of lesbian, gay, bisexual, and transgender persons. One of the specific objectives for that goal is to increase the number of population-based data systems using a standard set of sexual orientation questions to monitor progress on the Healthy People 2020 objectives.

These NHIS results are among the first data to establish benchmarks for health improvement. Among the results reflecting potential disparities in health status and health care access, especially for women who identified as lesbian or gay, or as bisexual:

A higher percentage of women who identified as straight (63.3%) reported being in excellent or very good health, compared to women who identified as lesbian or gay (54.0%). A higher percentage of women who identified as straight also reported having a usual place to go for medical care (85.5%), compared to women who identified as lesbian or gay (75.6%), or as bisexual (71.6%). A higher percentage of women who identified as bisexual (16.7%), or as lesbian or gay (15.2%) reported failing to obtain medical care in the past year due to cost, compared to women who identified as straight (9.6%).

A higher percentage of women who identified as bisexual (40.4) and as lesbian or gay (35.9%) were obese, compared to women who identified as straight (28.8%). In contrast, a higher percentage of men who identified as straight were obese (30.7%), compared to men who identified as gay (23.2%).

Women who identified as bisexual (29.4%) and as lesbian or gay (27.2%) were more likely to be current cigarette smokers than women who identified as straight (16.9%).

In some good news for HIV prevention, 81.2% of the men who identified as gay reported being tested for HIV in the past year, compared to 54.3% of men who identified as bisexual and 36.1% of men who identified as straight. Interestingly, men who identified as gay also had the highest rate of influenza vaccination (46.1%) compared to men who identified as straight (30.9%), or women who identified as straight (38.9%).

A followup methodology report about this sexual orientation data is being prepared by the National Center for Health Statistics. While the 2013 NHIS did not include a question about gender identity, NCHS is continuing to work on the development and testing of such a question for future inclusion in the NHIS.

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Kaiser Family Foundation: Non-Group Health Insurance Enrollees

This data brief from the Kaiser Family Foundation reports results from a national survey of individuals who have purchased their own health insurance (through “non-group” markets), including the Federally-Facilited Health Insurance Marketplace and state-based health insurance marketplaces established through the Patient Protection and Affordable Care Act (ACA). Forty-three of the respondents purchased their current health insurance through one of the ACA marketplaces. Forty-nine percent of the respondents had assistance in purchasing their current health insurance, with 34% using health insurance brokers or agents, 26% receiving assistance from the marketplace staff, and 22% receiving assistance from family members and friends.

Interestingly, 42% of the respondents are paying monthly premiums for their health insurance coverage below $200/month, and another 21% are paying monthly premiums between $201 and $500/month. Twenty-seven percent reported that they are receiving assistance paying their premiums and other health care costs (through tax credits under the ACA), with 81% of those individuals reporting that they could not afford the health insurance without the premium assistance.

The survey was conducted by telephone in English and Spanish from April 3 through May 11, 2014 among a nationally representative random sample of 742 adults who purchase their own insurance. The margin of sampling error for results based on the total sample is +/- 4 percentage points.

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Commonwealth Fund Issue Brief: Percentage of Uninsured Falls to 15%

An issue brief from The Commonwealth Fund reports that the percentage of uninsured Americans has fallen from 20% to 15%, with 9.5 million adult Americans obtaining health insurance coverage in the past nine months since the first open enrollment period began for the health insurance marketplaces established under the Patient Protection and Affordable Care Act (ACA). 5.7 million of the newly insured are young adults ages 19-34, with their percentage of uninsured falling from 28% to 18%.

The issue brief also highlights the importance of expanding Medicaid eligibility under the ACA: in the 25 states and District of Columbia that have implemented expanded Medicaid, the percentage of uninsured fell from 28% to 17%, but in the states that did not implement expanded Medicaid, there essentially was no change in the percentage of uninsured, from 38% to 36% uninsured.

The issue brief also provides some initial data about actual utilization of health insurance coverage by the newly insured. Sixty percent of the newly insured had used their coverage, and 78% reported that they were satisfied with their coverage. Sixty-seven percent of those that scheduled a first appointment with a primary care doctor were able to get an appointment within two weeks.

These data are based on a national telephone survey of 4,425 adults conducted in English and Spanish April 9 – June 2, 2014, with a margin of sampling error of +/- 2.1 percentage points at the 95% confidence level.

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Gallup: Percentage of Uninsured in U.S. Now at 13.4%

In June 2014, Gallup published results of its latest national poll confirming the percentage of uninsured individuals in the U.S. at 13.4%. This percentage reflects a continued decline from a high of 18% uninsured in the third quarter of 2013 and is the lowest percentage of uninsured since 2008.

Across nearly every major subgroup, the uninsured rate is lower now compared with the fourth quarter of 2013. The rate dropped more among blacks than it did in other major demographic groups, falling 6.2 percentage points to 14.7%. Hispanics had the second-largest drop in the percent uninsured across demographic groups. Although the rate among Hispanics is down 5.6 points since the end of 2013 to 33.1%, this remains the highest uninsured rate across key subgroups. Hispanics are a major target of public outreach efforts, because they historically are the most likely to be uninsured among demographic groups.

These data are based on more than 30,400 telephone interviews in English and Spanish from April 1-May 31, 2014, with a margin of sampling error of ±1 percentage points at the 95% confidence level.

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Fenway Institute and Center for American Progress: Asking Patients Questions about Sexual Orientation and Gender Identity in Clinical Settings

This report summarizes the findings of research conducted by the Fenway Institute and Center for American Progress on asking patients in clinical settings questions about their sexual orientation and gender identity. The research was conducted at four community health centers as part of the Community Health Applied Research Network (CHARN) funded by the Health Resources and Services Administration (HRSA) to support patient-centered outcomes research to improve the care and treatment of individuals in a network of community health centers. The participating community health centers were Beaufort Jasper Hampton Comprehensive Health Services in rural South Carolina; Chase Brexton Health Center in Baltimore, Maryland; Fenway Health in Boston, Massachusetts; and Howard Brown Health Center in Chicago, Illinois. The findings from this study are based on survey responses from 251 patients at these four community health centers who were 18 years and older, and completed their own patient registration forms in English.

While research on how to ask about sexual orientation and gender identity in clinical settings is still in a nascent phase, public health and demographic surveys have been gathering these data for many years. These surveys include the National Survey of Family Growth, the General Social Survey, the National Survey of Sexual Health and Behavior, versions of the Behavioral Risk Factor Surveillance System survey administered by several states, and the California Health Interview Survey.

Meanwhile, a 2011 Institute of Medicine report on lesbian, gay, bisexual, and transgender health commissioned by the National Institutes of Health recommended the collection of sexual orientation and gender identity data in electronic health records. The Joint Commission’s 2011 report, Advancing Effective Communication, Cultural Competence, and Patient- and Family- Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide, also encouraged the collection of patient data on sexual orientation and gender identity.

The brief survey asked respondents the following questions about sexual orientation and gender identity:

Do you think of yourself as:
[ ] Lesbian, gay or homosexual
[ ] Straight or heterosexual
[ ] Bisexual
[ ] Something else
[ ] Don’t know

What is your current gender identity? (Check all that apply)
[ ] Male
[ ] Female
[ ] Female-to-Male (FTM)/Transgender Male/Trans Man
[ ] Male-to-Female (MTF)/Transgender Female/Trans Woman
[ ] Genderqueer, neither exclusively male nor female
[ ] Additional Gender Category/(or Other), please specify
[ ] Decline to Answer, please explain why

What sex were you assigned at birth on your original birth certificate? (Check one)
[ ] Male
[ ] Female
[ ] Decline to Answer, please explain why

Additional questions were asked about understanding the questions and the response options, and willingness to answer such questions in a clinical setting. The response rate to the surveys was high, with only two or three potential participants refusing to complete the surveys at each site, citing lack of interest or time limitations. Most respondents from the Beaufort Health Center network in rural South Carolina (82%) said they were straight or heterosexual, as did 45% of respondents at Chase Brexton in Baltimore, 34% of respondents at Fenway Health in Boston, and 36% of respondents at Howard Brown in Chicago. Altogether, more respondents from the four health centers reported being heterosexual (47%) than any other orientation. Twenty-nine percent from the four locations said they were gay, lesbian, or homosexual. Twelve percent identified as male-to-female, or transgender female, and 6% identified as female-to-male, or transgender male. The sample was racially diverse: 51% White, 32% Black, and 6% multiracial or other. Nine percent were Hispanic.

Nearly three in four respondents from the four community health centers said that asking about sexual orientation on registration forms is important (73% versus 25%). An even greater majority said that asking about gender identity is important (82% versus 18%).

Ninety-five percent of lesbian, gay, and bisexual respondents said that they strongly agreed or somewhat agreed that they “understood what the [sexual orientation] question was asking about me.” Most heterosexual respondents also said they understood the sexual orientation question (81% strongly or somewhat agreed that they “understood what the [sexual orientation] question was asking about me”. Most heterosexuals and lesbian, gay, and bisexual respondents in all age groups said they would answer the sexual orientation question.

Only 1% declined to answer the current gen- der identity question, while another 1% chose “other”; the other 98% chose from among the gender identity options. Three percent declined to answer the question, “What sex were you assigned on your original birth certificate?”, while 97% did answer this question.

Seventy-nine percent of all respondents strongly agreed that they understood all the choices in the gender identity question. Eighty-five percent strongly agreed that they would answer the birth sex question, and 78% strongly agreed that they would answer the current gender identity question. Eighty- seven percent of transgender men and 71% of transgender women agreed or strongly agreed that the questions allowed them to accurately document their gender identity.

This evaluation of questions about sexual orientation and gender identity among a diverse group of patients at four CHCs shows widespread understanding of these questions and willingness to answer them, both among lesbian, gay, bisexual, and transgender respondents and among heterosexual and non-transgender respondents. The sexual orientation question tested in these four settings could, if widely used, be acceptable to patients across the country — lesbian, gay, bisexual, and straight — and provide important information on patients that can help us better understand health disparities affecting lesbians, gay men, and bisexuals. The two-step gender identity question (current gender identity and birth sex) was also widely understood by all patients surveyed. Strongly majorities believed that it was important for providers to know about their patients’ gender identity and would be willing to answer the question.

However, further research, including focus groups, would be helpful regarding concerns among transgender respondents with regard to answering the sex assigned at birth question. Eighty-five percent of transgender male respondents and 69% of transgender female respondents agreed or strongly agreed that they would answer the sex assigned at birth question. Yet 17% of transgender female respondents and 7% of transgender male respondents disagreed or strongly disagreed that they would answer the birth sex question, warranting additional understanding and responsiveness to this level of disagreement.

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Posted in Demographic Data, Demographic Data: Gender Identity/Expression, Demographic Data: Sexual Orientation, Lesbian, Gay, Bisexual and Transgender Health | 1 Comment

Centers for Medicare & Medicaid Services: Additional $730 Million Available for State Innovation Models

The Center for Medicare and Medicaid Innovation at the Centers for Medicare and Medicaid Services (CMS) has announced the availability of an additional $730 million for states to design and implement State Innovation Models. These awards provide significant flexibility to states to develop and implement innovative models to improve quality and reduce health care costs, often through multi-payer strategies that include Medicare, Medicaid, and now health insurance marketplaces established under the Patient Protection and Affordable Care Act.

In February 2013, CMS awarded design awards to 16 states (California, Connecticut, Delaware, Hawaii, Idaho, Illinois, Iowa, Maryland, Michigan, New Hampshire, Ohio, Pennsylvania, Rhode Island, Tennessee, Texas, and Utah), pre-testing awards to 3 states (Colorado, New York, and Washington), and testing (implementation) awards to 6 states (Arkansas, Maine, Massachusetts, Minnesota, Oregon, and Vermont).

In this second round, up to $700 million will be available for up implementation awards to up to 15 states, as well as up to $30 million for design awards for up to 15 states. Applications from the states are due on July 21, 2014, with the round two awards to begin January 2015, with one-year grants for design awards and three-year grants for implementation awards.

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Centers for Medicare & Medicaid Services: Health Care Innovation Awards Round Two

The Center for Medicare and Medicaid Innovation at the Centers for Medicare and Medicaid Services has announced the first batch of the second round of Health Care Innovation Awards, totaling up to $110 million. Unlike the first round with an open invitation for proposals, applicant organizations had to submit proposals that addressed the following specific innovations:

+ Models that are designed to rapidly reduce Medicare, Medicaid, and/or CHIP costs in outpatient and/or post-acute settings.
+ Models that improve care for populations with specialized needs.
+ Models that test approaches for specific types of providers to transform their financial and clinical models.
+ Models that improve the health of populations – defined geographically (health of a community), clinically (health of those with specific diseases), or by socioeconomic class – through activities focused on engaging beneficiaries, prevention (for example, a diabetes prevention program or a hypertension prevention program), wellness, and comprehensive care that extend beyond the clinical service delivery setting.

The following 12 organizations received the first batch of these awards (a second and final batch will be announced later):

+ Altarum Institute

+ American College Of Cardiology Foundation

+ Association Of American Medical Colleges

+ Avera Health

+ Children’s Home Society Of Florida

+ Clifford W. Beers Guidance Clinic, Inc.

+ Four Seasons Compassion For Life

+ Icahn School Of Medicine At Mount Sinai

+ New York City Health And Hospitals Corporation

+ North Shore LIJ Health System, Inc.

+ Regents Of the University Of California San Francisco

+ Regents Of The University Of Michigan

Profiles of each of the awards are here:

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University of California Los Angeles and University of California Berkeley: A Little Investment Goes A Long Way – Modest Cost to Expand Preventive and Routine Health Services to All Low-Income Californians

This analysis from the University of California Los Angeles Center for Health Policy Research and University of California Berkeley Labor Center estimates a relatively modest cost to the state of California to provide state-funded Medicaid (MediCal) to low-income California residents regardless of immigration status. Between 2.7 and 3.4 million Californians under age 65 are predicted to still remain uninsured by 2019, after the Patient Protection and Affordable Care Act is fully implemented. Of those predicted to remain uninsured, almost half — between 1.4 and 1.5 million — are ineligible for federal coverage options because of their immigration status.

The California legislature is considering Senate Bill 1005, the Health for All Act, that would expand Medi-Cal coverage to include primary and preventive care, prescription drugs, mental health care, dental care, and other routine health services for all low-income California residents regardless of immigration status. The authors examined current state and federal expenditures for health care costs for California’s undocumented immigrants, and conducted modeling using the California Simulation of Insurance Markets (CalSIM). Expanding MediCal coverage to low-income Californians regardless of immigration status would result in an estimated net increase in state expenditures between $353 and $369 million in 2015, increasing to between $424 and $436 million in 2019. This net increase in state spending is equivalent to 2 percent of projected state Medi-Cal spending, compared to an enrollment increase of 7 percent (between 690,000 and 730,000 individuals) in 2015.

The analysis includes detailed estimates of current costs (emergency services and pregnancy-related services) currently “billable” to the federal government for federal matching funds, of “take-up” or enrollment rates by those made eligible through the legislative change, and of the rate of utilization and costs (per member per month) among those newly enrolled. These costs are offset by additional fees on managed care plans for enrolling additional members, and relief of county-based obligations to provide health care services to low-income county residents.

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California HealthCare Foundation: In Their Own Words – Consumers’ and Enrollment Counselors’ Experience with Covered California

This report from the California HealthCare Foundation summarizes some of the experiences of consumers and enrollment counselors with enrollment for health insurance coverage through Covered California, the state-based health insurance marketplace established under the Patient Protection and Affordable Care Act. Numerically, Covered California has been the most successful of the state-based marketplaces, enrolling over 3 million of the 8 million individuals who obtained health insurance coverage during the first open enrollment period (October 2013 – March 2014) through the federally-facilitated and all the other state-based marketplaces. The report was prepared by PerryUndem Research/Communication and is based on focus groups and interviews conducted in February 2014 with 71 diverse consumers who had applied for health coverage through Covered California, 32 Certified Enrollment Counselors (CECs), and two Certified Insurance Agents.

While many were thankful to have health insurance, many still did not understand all the details about what types of health insurance coverage they were eligible for, and what types of assistance, both with enrollment and with payment of premiums and co-payments, were available. Consumers had difficulty understanding and calculating their incomes for eligibility purposes, meeting documentation requirements, and choosing a health plan. Many consumers reported frustration with the Covered California call center, and with receiving timely responses from MediCal, California’s Medicaid program. Latino consumers expressed confusion and fear about immigration-status concerns, and Mandarin and Vietnamese consumers reported gaps in language access.

Among the ideas for improvement:

+ Open the door wider. Consumers wanted Covered California to reduce call center wait times; to educate Californians that in-person enrollment help is avail- able; and to translate the Covered California online application into other languages. They also wanted the Medi-Cal processing time to be shortened.
+ Improve communications with consumers. Consumers wanted Covered California and Medi-Cal to be clearer upfront about the documentation required for enrollment and to clearly explain the Medi-Cal enrollment process.
+ Enhance the Covered California website. Consumers wanted Covered California to improve the online chat function, update the provider search function, and offer clearer guidance on how to calcu- late their incomes.
+ Conduct more outreach and education. Latinos wanted Covered California to address their specific enrollment concerns (i.e., immigration worries, fear of losing their home to Medi-Cal). Mandarin-speaking and Vietnamese-speaking consumers also suggested going deeper into their communities with outreach. Many consumers wanted more resources that explain how insurance works, particularly the various costs involved.
+ Offer more support to CECs and insurance agents. CECs and agents wanted a refresher training course to address real-life scenarios and complex cases. Some also suggested a feedback loop so CECs could share what they learned. Finally, agents wanted their own dedicated help line as the CECs have.

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