Agency for Healthcare Research and Quality's Healthcare 411

What prompted the development of the Health 411 Program?

The Agency for Healthcare Research and Quality began in 1999. Its research became focused on learning and evaluating societal trends, particularly with respect to the kind of health care Americans paid for and how they paid for it, and on health care received by "priority populations," which included women, children, minorities, older adults, disabled persons, chronically and/terminally ill individuals, as well as people living in both urban and rural environments, and those with low incomes. In 2005, we began using the Healthcare 411 to share the Agency's research with the general public. It has proven to be an excellent way to keep consumers informed and engaged in taking a more active role in their own health care.

Patient involvement is one of the most important issues being addressed in the Healthcare 411 audio podcast series as well as the need for doctors and patients to communicate more effectively with one another. While many featured podcasts focus on various areas of AHRQ-supported research, recent podcasts usually include a "call-to-action" message. The call-to-action is directed at the average American consumer, who makes up the majority of the program's audience. Specific calls-to-action include telling patients to engage their doctors and other health care providers by initiating a substantive dialogue with their provider.

In addition, we recently released the annual National Quality and Disparities Report for 2010 or QR DR. The writers and producers of Healthcare 411's audio podcasts draw from the research that went into completing the 2010QR/DR. For example, a recent podcast promoted a new, free consumer guide for parents whose child has been diagnosed with an autism spectrum disorder. The podcast encouraged parents of children with autism and related disorders, to review the guide, where they can learn about up-to-date findings on the latest treatment options to consider and discuss with their child's physician. The Healthcare 411 website also features videos, including Public Service Announcements (PSAs), Video Advice Columns, and Patient education videos. For the past two years, Healthcare 411 audio podcasts also have been geared towards a non-clinical audience, that is, average American consumers interested in unbiased, accurate information that can help them "navigate" an increasingly complicated health care system.

AHRQ's Healthcare 411 podcasts are now being aired on more than 1100 radio stations nationwide. Healthcare 411, while mostly comprised of audio segments, also offers videos for the public to watch. These videos can be seen while on the Healthcare 411 site using a computer, or can be downloaded so the video can be viewed at a later time. These videos include short, "patient education" videos, including several "video advice columns" from the Agency Director, Carolyn Clancy, MD, in which she offers viewers tips on "Navigating the Health Care System", as well as similar videos in Spanish, in which AHRQ's Dr. Ileana Ponce-Gonzalez addresses health care needs of Hispanic men and women. AHRQ's Healthcare 411 site is also a repository for video PSAs, most of which have been produced jointly by AHRQ and the Ad Council. The main themes have been centered around patient involvement, and have also emphasized the need for doctors and patients to build relationships...relationships which both doctor and patient should think of as partnerships.

A typical caregiver might be a member of the "sandwich generation." This group faces the challenges of having to care for both their children and their aging—if not ailing— parents. In addition to paying for their children's essentials including health care services, when needed, they may also have to care for their aging mother or father in some way.

For example, imagine a single working mother with three children, has an elderly father who, after having a recent health check-up has been put on several hypertension medications and a statin drug for cholesterol. The woman's father, a widower who can no longer drive due to poor eyesight, is finding it increasingly difficult to care for himself, and needs his only daughter's assistance with figuring out which medicines to take, how much to take, and what time he needs to take them. Healthcare 411 is the ideal source from which she can almost effortlessly obtain and learn about the latest in health care relevant to her, her children and father. By signing up to receive Healthcare 411 alerts, logging onto the AHRQ website, searching for, and ultimately downloading the podcasts concerning the topics she likes onto her portable media player, she can take and then share the information with friends, family, and coworkers.

The Healthcare 411 website has seen a steady increase in "traffic" over the past few years, and the number of subscribing radio stations in the U.S. has also grown. In 2009, the program began to also run a Spanish language version of the series. In terms of accolades, apart from positive feedback from listeners, a recent PSA that became part of Healthcare 411 was awarded a bronze Telly Award.

Since we began showing a series of Spanish language video advice columns featuring the AHRQ's Dr. Ileana Ponce-Gonzalez, there have been many native Spanish speakers who have expressed their appreciation for the program and the things they learn from it. Constituents such as the Mexican Embassy, Peruvian Consulate (which represents numerous hospitals), Hispanic television stations like Univision and Telemundo, as well as Spanish-speaking consumers, have given positive feedback and request more health information in Spanish.

The staff at AHRQ staff will continue to find ways to cross promote the messages of Healthcare 411, with any related AHRQ publications, and also through forming partnerships with other health care message services like those of the Vericom Corporation, which provides "on hold" phone messaging services to hospital and also disseminates audio and various multimedia programming to more than 6,000 parties, mostly comprised of hospital marketers and health care professionals involved in quality of care. Lastly, to keep up with the growing trend of accessing Web content via mobile devices such as smart phones like the Droid, Blackberry, and the iPhone, as well other portable, handheld "computers", including some Tablet PCs and iPads, we anticipate having a fully functional mobile-ready version of the Healthcare 411 site "up and running" in the very near future.

October 5-7

The Rosalynn Carter Institute for Caregiving's National Summit & Training Institute will take place in Americus, Georgia on October 5-7, 2011. The event will include training on three evidence-based programs (Reach II, Care Consultation, and Powerful Tools for Caregivers) as well as sessions focused on implementation of programs in the community. For more information, visit Rosalynn Carter Institute web site.

October 21-23

The Well Spouse Association will sponsor a conference on October 21-23, 2011 in Atlanta, Georgia. The keynote for the conference is Elissa Lewin, who founded a respite home for caregivers in Pennsylvania, and sessions include "The Nursing Home Decision," "Hospice Care," "Handling Difficult Ill Spouses," "Caregiver's Bookshelf," and "Lessons Through Loss." Early registration ends September 21st, for more information, or to register, visit: http://www.wellspouse.org/calendar/2011-wsa-conference-atlanta-ga.html

Survey of Family Caregivers on Technology and Changes to the Home

. . . Over the years we have found that while there may be equipment or devices that may reduce physical demands of caregiving,  families are often unaware that they exist, where to find them and how to use assistive technologies.

The answer may lie with better training with all levels of professionals in this area, more consumer information about these devices, provision of consumer training programs around assistive technologies and improved ways for families to access the products (including the issue of cost).

Organizations should send the Survey of Family Caregivers on Technology and Changes to the Home to family caregivers that they are associated with. Responses will let FCA and provider organizations know what family caregivers want and need most so we can customize our programs and services. You can take the survey now, or if you have questions, you can email adrctae@lewin.com with questions.

Study: Caregivers and Relatives Perceive Care Differently

A recent study interviewed 266 pairs of primary caregivers and their loved one with mild to moderate dementia and the results appear in the August issue of the Gerontologist. Each person was interviewed separately about five values: autonomy, burden, control, family, and safety.

. . . The authors found that adult children underestimated the importance of the five core values to their parents with dementia and that the discrepancies were associated primarily with the caregivers' beliefs about their loved one's involvement in decision making. They conclude that it is important for caregivers to gain a more accurate idea about their loved one's values and preferences, perhaps in the earlier stages of dementia, since caregivers will become the surrogate decision makers as the disease progresses. For more information, visit:

PennState Release: "Caregivers and their relatives disagree about care given, received"

Gerontologist Article: "Understanding Discrepancy in Perceptions of Values: Individuals With Mild to Moderate Dementia and Their Family Caregivers" (abstract is free)

FCA Fact Sheet: "Caregiver's Guide to Understanding Dementia Behaviors"

Lifespan Respite Program Reauthorization Update

The Committee, created by the law that raised the debt limit in early August, is tasked with proposing at least $1.2 trillion in debt reduction by November 23, which both houses of Congress are required to vote on by December 23. If the Committee does not reach agreement or if Congress fails to enact their recommendations, automatic across the board program cuts will occur.

On September 9, 2011, the National Respite Coalition, the policy arm of the ARCH National Respite Network, was invited to provide input on OAA reauthorization at a formal meeting of Republican and Democratic staff of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over both the Older Americans Act and Lifespan Respite. NRC's oral statement was related to the importance of respite in the National Family Caregiver Support Program. Another statement, signed by 28 national organizations, proposing an expedited reauthorization of Lifespan Respite with no changes to current law, was submitted to staff in writing. The Senate HELP Committee would like to complete action on the OAA this fall, but little discussion on Lifespan Respite reauthorization has yet taken place. It is in the best interests of the Lifespan Respite Program that it be reauthorized quickly. The Senate could be persuaded to take quick action, but action is unlikely in the House any time soon. The Administration on Aging gathered public comments on Lifespan Respite reauthorization. A summary of the comments made is available for viewing along with more information at the AoA site.

Respite Provider Training and Recruitment

1) Direct Care Alliance Personal Care and Support Credential
The national Direct Care Alliance Personal Care and Support Credential is a competency-based test for personal assistance workers in home and community-based settings.

2) Resources from PHI: Quality Care through Quality Jobs
The PHI State Data Center provides up-to-date state-level profiles of the direct service workforce, including workers from service delivery systems for individuals of all ages with physical, developmental, or intellectual disabilities, and with chronic illnesses and end-of-life care needs. These profiles feature key workforce statistics presented in easy-to-read downloadable charts plus information on state-based initiatives to improve the quality of the workforce with information about the size of the direct service workforce, wage rates, benefits, and notable workforce initiatives for individual states and the United States as a whole.

PHI Training and Organizational Development Services offer a series of downloadable training curricula, slides, evaluation forms and other training materials on topics such as abuse and neglect prevention training, falls prevention, and Personal Care Services Curriculum.

3) Resources from the National Direct Service Workforce Resource Center
DSW National Resource Center has wonderful resources and best practices on training and recruiting direct care workers. One such document emerged from a Leadership Summit on Building Capacity and Coordinating Support for Family Caregivers and the Direct Service Workforce convened by the Centers for Medicare and Medicaid Services (CMS) in September 2010. Greg Link from AoA, and ARCH participated in the event and were given the opportunity to comment on the resulting draft paper. Kathy Kelly of Family Caregiver Alliance was one of the featured speakers. The leaders in attendance at the Summit ultimately articulated 12 common goals, each with specific policy recommendations that are presented in Building Capacity and Coordinating Support for Family Caregivers and the Direct Service Workforce: Common Goals and Policy Recommendations Emerging from the CMS Leadership Summit on the Direct Service Workforce and Family Caregivers.

4) College of Direct Support
The College of Direct Support (CDS) is a computer-assisted, competency-based, interactive multimedia training curriculum for direct support professionals in community settings.

5) Canadian and State Examples of Competencies, Training

Requirements and Training Curricula for Respite and other Direct Care Workers
Arizona	AZ Direct Care
Iowa	Iowa Direct Care Workforce Initiative
Maine	Maine has developed on-line training for respite providers that is part of their certification program. This web-based training program is specific to the requirements of the State of Maine.
Ontario, Canada	SafeGuards, of Ontario, Canada, offers an open-entry, self-paced online course designed to prepare individuals to work in respite support situations and to provide a basic level of training for current respite workers. They also offer a course for those working with children with autism.

For more resources on training respite workers and the direct care workforce, see ARCH Training Resources.