To ensure health reform works for those with the most at stake, the National Partnership for Women & Families, Community Catalyst and the National Health Law Program (NHeLP) today launched the Campaign for Better Care, a multi-year initiative that will focus on improving health care quality, coordination and communication for older patients with multiple health problems and their family caregivers. One of the new Campaign’s key goals is to build a consumer movement of and for older adults and individuals with multiple chronic conditions, who are counting on health reform to provide the patient-centered, comprehensive and coordinated care they need. The Campaign for Better Care is funded by The Atlantic Philanthropies.

“Health reform is law, but in some ways the hardest work is just beginning,” said National Partnership President Debra L. Ness. “Reform has given us key building blocks, but we need to implement it in ways that will improve care for our sickest patients — those who are the heaviest users of our health care system, with the highest costs and the poorest outcomes. Millions of older people with multiple chronic conditions and their families are counting on reform to improve coordination and care. It is essential to their independence, quality of life and financial security. If we can make the system work for this population, we can make it work for everyone. The Campaign for Better Care will organize a powerful nationwide network of advocates to advance that goal.”

A national survey of Americans age 50 or older, conducted by Lake Research Partners in March for the Campaign for Better Care, finds that three in four respondents (74 percent) have wished that their doctors talked and shared information with each other. Millions have experienced problems related to a lack of communication and coordination, which tend to especially affect heavy users of the health care system and people of color:

• 40 percent of people who take five or more medications, 47 percent of heavy users of the health care system, and one in three people age 50 or older say their doctors do not talk to them about potential interactions with other drugs or over-the-counter medications when prescribing new medications.
• 36 percent of heavy users of the health care system, and 20 percent of people age 50 or older, say they have received conflicting information from different doctors.
• One in eight (13 percent) respondents — and 20 percent of Latino respondents has had to redo a test or procedure because the doctor or hospital did not have the earlier results.
  35 percent of respondents with multiple chronic conditions, and 30 percent of respondents overall, have had to themselves bring an X-ray, MRI or other test result to a doctor’s appointment.

• 45 percent of heavy users of the health care system, 40 percent of those with multiple chronic conditions, and 29 percent of respondents overall have had to act as a communicator between doctors who weren’t talking to each other.
• Three-quarters of heavy users of the health care system (76 percent) have left a doctor’s office or hospital confused about what to do at home.

“These numbers are appalling, and they translate into debilitating and avoidable health problems, untold stress on family caregivers, precious health dollars wasted, unacceptable disparities, duplicative tests and procedures, and lost lives,” said NHeLP Executive Director Emily Spitzer. “We can and must do better. Our goal with the Campaign for Better Care is to empower and engage patients and their caregivers, so we can ensure that reform delivers on its promise to vulnerable older patients and their families. It’s simply not right that older people — who often are the sickest and most vulnerable — are not getting the health care they need.”

The Campaign’s policy agenda aims to ensure that the reformed health care system provides the comprehensive, coordinated, patient- and family-centered care that older adults and individuals with multiple health problems need. It will advocate for better ways of delivering care including effective care coordination, transition management, medication reconciliation, support for patients and their family caregivers, and care that is culturally and linguistically appropriate. It will support payment strategies that enhance primary care practice and reward better quality, coordination and communication among providers, patients and family caregivers. It will press for performance measurement that holds providers accountable and sets priorities for quality improvement. It will promote effective use of health information technologies. It will press for assessment of patient experience to improve care and tools that empower patients and caregivers to make fully informed decisions.

“In addition to our national work, we are mobilizing diverse state-based advocacy organizations and networks in support of the Campaign for Better Care’s policy agenda,” said Community Catalyst Executive Director Rob Restuccia. “We are helping consumer groups build state-based campaigns to support policies that advance high quality, comprehensive, coordinated care for vulnerable older adults and their families. Each campaign includes state and local groups and individuals, and represents people with multiple chronic conditions and their family caregivers. These state campaigns bring a powerful consumer voice to help shape the delivery of health care at the local, state and national levels.” The state work will focus on:

Maine: The Maine Campaign for Better Care, led by Consumers for Affordable Health Care, is working to ensure that older adults in Maine get the comprehensive, coordinated, quality health care they need and deserve. As part of its work, the state Campaign is making sure the needs of patients and their family caregivers are front and center in the legislative debate over new payment strategies aimed at rewarding better quality, more efficient care.

Massachusetts: Led by Health Care for All, the Massachusetts Campaign for Better Care is training older adults and caregivers as grassroots advocates for comprehensive, coordinated, quality health care. As part of its work, the state Campaign is actively providing a consumer perspective on state discussions about health care costs and proposals to create new payment strategies that will reward better quality and more efficient care.

North Carolina: Led by the Health Access Coalition of the North Carolina Justice Center, the North Carolina Campaign for Better Care is using new media strategies to convey the need for better care for the most vulnerable North Carolinians. The Campaign will work to ensure that expansions of the state medical home program provide the comprehensive, patient- and family-centered care that older adults want and need.

Ohio: Led by the Universal Health Care Action Network of Ohio (UHCAN Ohio), the Ohio Campaign for Better Care is working to ensure that older Ohioans get the comprehensive, coordinated, quality health care they need and deserve. As part of its work, the Campaign is bringing a strong consumer voice to the state Health Care Coverage and Quality Council which is working to improve the quality and cost-effectiveness of Ohio’s health care system.

Pennsylvania: The Pennsylvania Campaign for Better Care, led by Pittsburgh-based Consumer Health Coalition, is organizing consumers and working to convey the need for better care for the most vulnerable Pennsylvanians. The Campaign is working to expand support for Pennsylvania family caregivers and to ensure that state quality measurement data gives consumers the tools they need to assess and improve care.

Wisconsin: Led by the Coalition of Wisconsin Aging Groups, the Wisconsin Campaign for Better Care is mobilizing communities and training older adults as grassroots advocates in support of comprehensive, coordinated, quality health care. As part of its work, the Campaign is creating a Blue Ribbon Task Force aimed at addressing the need for coordinated care and identifying quality measures that reflect the needs of older adults.

Lake Research Partners conducted this survey, administered by Knowledge Networks, among a nationally-representative probability sample of N = 1,066 adults ages 50 and older. The survey was conducted March 26 through 30, 2010. The margin of sampling error for the survey is +/- 3.0 percentage points. The sampling error is larger for smaller subgroups within the sample.

The Campaign for Better Care launches with a broad-based Steering Committee comprised of leaders of some of the nation’s most powerful groups, and a diverse Consumer Coalition with more than 100 national, state and local organizations that are coming together for the first time ever to work on this set of issues. Learn more, and read stories of patients who need better care, at www.CampaignForBetterCare.org.