Partnership for Patient Safety and the Institute for Alternative Futures Awarded AHRQ Grant

Chicago, January 22, 2003 - Partnership for Patient Safety (p4ps) and the Institute for Alternative Futures (IAF), working in consortium with consumer leaders Roxanne Goeltz and Susan Sheridan, announced the receipt of a federal grant to convene a consumer-led workshop to advance patient safety. The Agency for Healthcare Research and Quality (AHRQ) awarded almost $50,000 to the two organizations through the small conference grant program.

AHRQ is the Nation's lead Federal agency for research on healthcare quality, costs, outcomes, and patient safety. Each year, AHRQ awards grants through the small grant program for conference support to public and private nonprofit organizations. This program is intended to complement and promote AHRQ's core research by providing a mechanism for Agency stakeholders and others to 1) develop health services research agendas and identify strategies and mechanisms for studying them; 2) discuss and develop consensus around health services research methodological and technical issues; 3) disseminate health services research information for formulating or evaluating health policy, managing health care programs, and using or purchasing health services; and 4) develop partnerships with stakeholder organizations and build their capacity to participate in research activities and use the results of health services research.

Consumer-Led Workshop to Advance Patient Safety

This grant will fund in part a facilitated workshop designed to build on actual consumer experience with the healthcare system in order to envision proactive partnership roles for patients and to engage other ancillary sectors in realizing the vision consumers articulate. Both Sheridan and Goeltz have experienced healthcare system failure at close range, and are motivated change agents. They share the perspective that consumers have a role and a responsibility in ensuring their own safety in the healthcare system, and working with other stakeholders to make the system more patient-centered and systems-based.

The specific objectives of the workshop include 1) articulating the ways in which consumers can contribute to safety; 2) outlining the obstacles, gaps and opportunities in the current environment that consumers have encountered in their attempts to advance patient safety; 3) identifying what else can be done; and 4) making recommendations for next steps.

"Healthcare consumers are the least represented stakeholder group in deliberation on healthcare safety and quality issues, and when we do hear from them it's usually in the roles of adversary or passive victim," said Martin J. Hatlie, JD, President of p4ps. "In fact patients, their families and friends often see rips in the safety net the healthcare system doesn't, and have suggestions for improvement the system doesn't capture. We are delighted to receive this grant to help integrate consumer perspectives into research and policymaking activities developed through a patient-centered, patient led deliberative process."

"The opportunity is to create new approaches through which patients who have learned from experience can guide others. Imagine how systems that address safety and accountability can improve with organized and active patient guides who can connect through the web and organize support systems. We can contribute to safer and more caring healthcare environments through this project," said Jonathan Peck, Vice President of the Institute for Alternative Futures. "Unfortunately, in healthcare consumers are the last interest to be organized, and it's crucial they be empowered. The system won't be as safe as it can be --as consumers want it to be and should expect it to be -- unless they can articulate what their expectations are. In this workshop, we'll develop that vision."

About Roxanne J. Goeltz

Roxanne Goeltz lost her brother, Mike, when he experienced an adverse treatment outcome as a hospitalized patient. While Mike's family chose not to litigate, they have never understood exactly what caused his death. Ms. Goeltz also is a cancer survivor, with substantial experience navigating the healthcare system as a patient. An air traffic controller by profession, she brings a systems perspective to her work in safety. She has served as a member of the Hasting Center Ethics Committee on Patient Safety and is presently on the National Patient Safety Foundation (NPSF) Patient and Family Advisory Council (PFAC).

"In the healthcare arena of today, the very notion of clinician -patient partnering is only a small seed," observes Goeltz. "Consumers who are trying to be a partner with their healthcare providers are not likely to speak or think in terms of being a partner. What motivated me were my brother's death and the realization we -- the patient and/or family members and friends - have our part to play in increasing our safety in the healthcare system. From that idea grew the belief that I had to be an effective partner with the people treating me."

About Susan E. Sheridan, MIM, MBA

Pat Sheridan, Susan's husband, died last year after seven surgeries to combat spinal cancer. His family believes that Pat's death was caused by the failure of a healthcare system to communicate their original diagnosis of cancer, leading to a six-month delay in treating Pat's condition. After repeated requests to discuss their concerns in the context of mediation failed, the Sheridan family filed suit on the eve of the statute of limitations expiring. That suit is now pending. Additionally, Pat's and Sue's seven-year-old son, Cal, has kernicterus, a brain injury that consists of cerebral palsy and a complex of other neurological deficits, that he suffered as the result of a failure to diagnose and treat his neonatal jaundice. Cal's claim was heard in a seven-week trial after years of discovery, was appealed and settled just before a new trial was to commence. Susan is the founder and President of Parents of Infants and Children with Kernicterus (PICK), a not-for-profit organization dedicated to partnering with the healthcare delivery and public health system to eradicate kernicterus and improve neonatal safety. PICK has worked with the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to issue a Sentinel Event Alert (April 2001) on kernicterus -- the first ever prompted by a consumer report to the JCAHO; with the CDC to issue a Morbidity and Mortality Weekly Report (June 2001) on the condition; and with the National Quality Forum to ensure that kernicterus was recognized and understood to be an event that is so preventable it should never happen (January 2002). In 2002, PICK was part of a consortium awarded a large CDC grant to do consumer education on the risks of kernicterus.

"My family realized that litigating claims is slow and polarizing. It does not cause health system change -- at least not rapidly, but that's where injured patients are automatically funneled," said Ms. Sheridan. "PICK is determined to eradicate kernicterus by 2004, and to do that we had to create a new road map. Our goal is feasible only if the entire system works together as functional, trusting partners dedicated to the fundamental goal of protecting babies from harm. Within that partnership, friends and family of the newborn are a huge part of the solution for keeping babies safe."

About the Partnership for Patient Safety

The Partnership for Patient Safety (p4ps) is a patient-centered initiative to advance the reliability of health care systems worldwide. The mission of p4ps is to initiate focused partnerships and joint ventures with organizations and individuals that share its core values and objectives of achieving a healthcare system that is authentically patient-centered and systems-based.

About the Institute for Alternative Futures

The Institute for Alternative Futures (IAF) is a think tank located in Alexandria, Virginia. IAF was founded in 1977 by Dr. Clement Bezold, Dr. James Dator and Alvin Toffler. The mission of IAF is to help individuals and organizations more wisely choose and create the futures they prefer. IAF's services enable their clients to clearly understand the accelerating pace of change and focus their energies on clarifying their highest aspirations. IAF's for-profit consulting firm, Alternative Futures Associates (AFA), applies the same techniques to evaluate the potential futures facing corporations.

Contacts:

Martin J. Hatlie	Jonathan C. Peck
Partnership for Patient Safety	Institute for Alternative Futures
312-274-9695	703-684-5880
mhatlie@p4ps.org	jpeck@altfutures.com