Since 1990, The Partnership has been actively involved in research and implementation projects to increase organ donation throughout the U.S. and Canada in over 125 hospitals. The organization continually investigates new and promising avenues for solving the donor shortage. The Partnership collaborates with the Harvard School of Public Health and Harvard Medical School in designing, analyzing, evaluating and publishing the results of these efforts.
1990-1992:
With the goals of building OPO skills as "change agents" and of improving
rates of donation in hospitals, The Partnership identified four OPOs as
project partners: California Transplant Donor Network; Kentucky Organ Donor
Affiliates; LifeSource Upper Midwest Organ Procurement Organization; and
Washington Regional Transplant Consortium.
The objectives were: to increase the rate at which hospital staff identified potential organ donors; to increase the number of potential donor cases referred to OPOs; to increase the rate at which families of potential organ donors were offered the option to donate; and to increase the rate at which donation requests followed a prescribed protocol. We hypothesized that achieving these objectives would lead to an increase in organ donation.
The intervention comprised four elementsÑdiagnosis of hospital donation performance, development of tailored strategies to improve hospital performance, creation of multi-disciplinary donation teams within hospitals, and education to introduce and reinforce recommended donation practices.
The program led to significant increases in donation in participating hospitals, attributable to better identification of potential donors and more consistent asking of families to donate. We confirmed that donation requests with certain characteristics (i.e., conducted in a private setting, occurring only after brain death had been explained to the family, and made jointly by the OPO and hospital staff) led to significantly higher rates of donation. However, we did not see changes in the frequency with which donation requests incorporated these process recommendations.
1993-1994: This phase aimed to accelerate the implementation process in hospitals by focusing on fewer hospitals per region, and by securing explicit institutional commitment from the participating hospitals.
We continued to work with OPOs as our primary project partners: New Jersey Organ and Tissue Sharing Network, Delaware Valley Transplant Program and New York Organ Donor Network. Four hospitals were selected within each site. Intensive OPO education was provided to prepare the OPO to utilize these methodologies in all major donor hospitals after our project had concluded.
Within the hospitals, the intervention elements were the same as in our earlier work. While we did succeed in accelerating the implementation of the program, we found that results generally paralleled those of the first phaseÑincreases in identification and referral of donors, but little change in the quality and consistency of the actual request process.
1994-1997:
We redesigned the next phase of interventions to incorporate more direct
focus on hospital systems, i.e., formal hospital protocols for donation,
skills-based education for hospital staff, an in-hospital team responsible
for coordinating donation with the OPO, and systems to monitor performance
on an ongoing basis. Recognizing that no outside agency will be able to
control all of the crucial elements within a hospital, this model intensifies
the focus on institutionalizing the in-hospital process and staff roles,
and fosters the development of professional standards of donation practice.
The goal is to show breakthrough donation increases in a set of hospitals,
under research conditions, and thoroughly test an implementation strategy
placing appropriate responsibility within the hospital for donation process
excellence.
In 1994, we implemented a pilot project at the University of Texas Medical Branch at Galveston (UTMB). Donation climbed to over 50 percent from 34 percent. While the project was initiated by the hospital, the OPO was a full partner in designing and implementing the new system.
In late 1995, an implementation project was begun at Johns Hopkins Hospital and the University of Maryland Medical System, in collaboration with the Transplant Resource Center of Maryland. This first-of-its kind collaboration among "competing" health care providers created a model that can be replicated throughout the nation in metropolitan areas where more than one transplant center competes for the shared donor pool.
The University HealthSystem Consortium and The Partnership are currently collaborating on a major initiative to improve organ donation practices in up to 20 leading academic hospitals nationwide. The project is designed to significantly increase organ donation in both transplant and non-transplant hospitals by implementing a standard donation protocol.
In addition, 13 Canadian hospitals have joined with The Partnership in an international initiative called Donor Action, which uses the review of medical records and surveys of hospital staff to diagnose donation practices and identify opportunities for improvement. In a follow-up project, four hospitals will be selected for full implementation of systematic donation protocols.
We also track the donation request process prospectively, recording the time sequence of key events, including the explanation of brain death and the request for donation. Demographic data on the deceased patient are collected along with information about the involved hospital and OPO staff. To date, we have collected data from over 45,000 medical records. We have collected information regarding request process and demographic information from 8,355 potential donor situations. We have also surveyed staff at 37 hospitals, reaching nearly 2,300 staff members.
Since 1992, our research and evaluation efforts have been enhanced through the involvement of a team from the Harvard School of Public Health and Harvard Medical School. We also secure input from critical care and transplant advisory boards, ensuring that our work reflects state of the art thinking from the medical and nursing fields.
Other Research Activities: In addition to the site-related evaluation, we have conducted several independent research projects. Two were funded in 1993 through the grants program administered by the Division of Organ Transplantation (DOT) in the Department of Health & Human Services. Our project collaborators included the Harvard School of Public Health, Harvard Medical School and several OPOs.
A Methodology for Estimating Donor Potential in OPO Service Areas: This study was designed to yield a simple, inexpensive and valid method of estimating the number of potential organ donors in OPO service areas. Understanding donor potential has become a key focus of concern for the field, especially since a 1993 General Accounting Office report on donation and transplantation highlighted the need to accurately assess OPO performance.
Participating OPOs were California Transplant Donor Network, LifeSource Upper Midwest OPO and Washington Regional Transplant Consortium. Our medical record review methodology provided the starting point. Analysis of the data indicates that the publicly available hospital characteristics with the greatest predictive power are total beds, trauma center certification, medical school affiliation, number of hospital deaths, and the severity of illness treated at each hospital. At the OPO level, the model appears to provide valid estimates of donor potential. Hospitals with fewer than 50 beds appear to have little potential.
A Study of Donor and Non-Donor Families and the Hospital Request Process: This study was designed to provide insight about familiesÕ experiences in donation, with the goal of recommending donation process improvements. Participating OPOs were Delaware Valley Transplant Program, New Jersey Organ and Tissue Sharing Network and New York Organ Donor Network. This project followed all families who had been offered donation in the three regions. Six months after the death of their relative, families were contacted by a trained telephone interviewer, administered through the Harvard School of Public Health, to participate in the in-depth telephone survey. Approximately 60 percent of the 164 survey respondents were donor family members, and 40 percent had declined donation. The study shows that donation request practices vary widely and reveals that non-donor families are less satisfied with many aspects of the hospital experience. There is a widespread lack of understanding of brain death, especially among non-donor families. Significantly, the data show that while nearly every donor family respondent was satisfied with their decision to donate, about one-third of non-donor family respondents reported they regret their decision. (See Publications & Abstracts, "Explaining brain death: a critical feature of the donation process.")
Living Kidney Donation Survey: The Partnership undertook a research project on living kidney donation by conducting a survey at the American Nephrology Society meeting in 1994 and at the American Society of Transplant Physicians and the American Society of Transplant Surgeons meetings in 1995. The survey deals with the process of evaluating potential living donors and asking candidates to donate, and assesses beliefs and attitudes of health care practitioners toward living donation. (See Publications & Abstracts, "Living Kidney Donation: A Survey of Professional Attitudes and Practices.")
Donor ActionÑAn International Collaboration: The Partnership was invited to participate in an international effort to increase organ donation in 1994 in Seville, Spain. Donor Action is a collaboration among The Partnership for Organ Donation, Eurotransplant Foundation (the largest organ exchange organization in Europe), Organizaci—n Nacional de Trasplantes (a technical organization under the Spanish Department of Health), The Rowland Company (a public relations firm in Switzerland) and Novartis (based in Basle, Switzerland).
The Donor Action team has created a prototype program including tools to optimize each step of the donation process from donor identification through donation request. The program is based on educational materials, training programs and data collection tools from each organization, and can be adapted to meet diverse national and hospital needs. The pilot study is targeted at high donor potential hospitals in Europe and Canada and focuses on educating and training key hospital and organ procurement staff.
Conference: Joining Forces: The Partnership co-hosted a major conference with the Harvard School of Public Health in 1995. The objective of Joining Forces: A Meeting of Transplant Leaders to Increase Organ Donation was to motivate leaders in the transplant community to work collaboratively to resolve the organ shortage, and identify a research-based strategy.
Much of the focus was on the role of hospitals in bringing about better donation practices. Nearly 70 participants from leading transplant centers and pharmaceutical companiesÑincluding CEOs, senior executives, administrators, transplant surgeonsÑand representatives from OPOs and other national organizations worked together to identify the causes of the donor shortage and to agree upon the priorities and a course of action to address them.
The conference focused not only on the theory of how to increase organ donation, but also on successful case studies and practical implications for institutionalizing donation improvements. At the conference, we shared a vision for the donation system that we believe is attainable and will greatly improve both the treatment of donor families and the availability of transplants to those in need.
Congressional Field Hearing: The first-ever Congressional Field Hearing on Organ and Tissue Donation was held in Boston on Sept. 30, 1996, by Rep. Joseph Moakley (D-MA) and Sen. Edward Kennedy (D-MA). Coordinated by The Partnership, the event, "Organ and Tissue Donation: Mobilizing Massachusetts Families, Communities and Hospitals," was co-sponsored by Harvard Medical School and the Harvard School of Public Health. Witnesses included donor family members, transplant recipients, physicians, researchers and professionals from organ procurement organizations and other local organizations.
The event attracted a large audience and resulted in good media coverage, a renewed sense of collegiality and cooperation among the many organizations working to increase donation, and excellent testimony provided by two panels of speakersÑone panel focusing on family perspectives and successful community outreach and the other on optimizing donation in hospitals. The Partnership prepared a "How-To Guide" to strongly encourage other organizations concerned with organ and tissue donation to work with their congressional representatives and local legislators to organize similar events in their own regions.
Professional Meetings: We attend and participate in professional meetings regularly. In 1997, these included:
Visit those presented abstracts posted on the web!
Media Coverage: Highlights of The PartnershipÕs media coverage include:
Gallup Survey and Conference: We co-sponsored the largest-ever Gallup Survey on organ donation in 1993, in conjunction with the Harvard School of Public Health and 17 OPOs, and held a conference to announce the findings and develop plans of action. Over 100 participants attended, representing all segments of the donation and transplant community. The event focused attention on the key educational issues that must be resolved to convert public support into action, and opened opportunities for public education initiatives.
The key findings include:
A Different Kind of Love Letter: The Partnership joined Transplant Recipients International Organization (TRIO) in 1994 to launch "A Different Kind of Love Letter," a grass roots public education effort encouraging people to discuss their wishes regarding organ donation with their families. The campaign built upon the Gallup survey findings that while most Americans support donation and would be willing to donate, they have not told their families of their wishes and do not realize that family consent is required.
The campaign centered around a simple one-page letter asking readers to talk to their families about organ donation, then copy the letter and mail it to five or more friends, creating a "chain" of communication. The letter has appeared in transplant publications and general media, and conservative estimates are that the letter and information about it have been seen over 200,000 times.
The Donor Tracking Tool is a data collection form that is used prospectively
to track the process steps in each donation situation. Focusing primarily
on family communication, the donor tracking tool records who was involved,
when the subject of donation was raised and how the family responded. Data
from donor tracking tools can be analyzed to identify opportunities for
improvement in the donation process and to target individuals, services
or units in need of education.
Hospital Staff Survey provides insight into the attitudes and knowledge of key staff about donation and transplantation, and assesses hospital staff awareness of the optimal donation process components. This information highlights potential barriers to organ donation in hospitals and assists in identifying opportunities to remove those barriers.
Educational tools are used to teach hospital staff about organ donation and their roles in the donation process. These tools are used in a variety of forums, such as grand rounds, one-on-one meetings, brief hospital in-services or intensive two-day training programs for in-house donation teams.