E
HRSA’s Extramural Research Program

As discussed in Chapter 1, one of the primary sources for the funding of behavioral research related to increasing the rates of organ donation is through the extramural grant program funded by the Division of Transplantation (DoT) of the Health Resources and Services Administration (HRSA). The committee was asked to provide input on methods of evaluation of HRSA’s research grant program, and this appendix focuses on that program. Committee members had the opportunity to have discussions with the grantees and with the Division of Transplantation staff administering the program, as well as to review the published literature resulting from the extramural grants.

OVERVIEW OF HRSA’S EXTRAMURAL RESEARCH PROGRAM

The Division of Transplantation is charged with overseeing the Organ Procurement and Transplantation Network, the Scientific Registry of Transplant Recipients, and the National Bone Marrow Donor Registry and with developing and implementing national programs to increase the rates of organ, tissue, bone marrow, and blood donation.

HRSA’s extramural grants program examines a wide array of interventions to increase organ donation rates. The grants are generally funded for 3 years, with annual reviews. The grants program targets key points across the donation continuum. The primary emphasis is on the Social and Behavioral Interventions grants program, which seeks to raise public awareness of organ donation and generate public commitment. Related to this effort,



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Organ Donation: Opportunities for Action E HRSA’s Extramural Research Program As discussed in Chapter 1, one of the primary sources for the funding of behavioral research related to increasing the rates of organ donation is through the extramural grant program funded by the Division of Transplantation (DoT) of the Health Resources and Services Administration (HRSA). The committee was asked to provide input on methods of evaluation of HRSA’s research grant program, and this appendix focuses on that program. Committee members had the opportunity to have discussions with the grantees and with the Division of Transplantation staff administering the program, as well as to review the published literature resulting from the extramural grants. OVERVIEW OF HRSA’S EXTRAMURAL RESEARCH PROGRAM The Division of Transplantation is charged with overseeing the Organ Procurement and Transplantation Network, the Scientific Registry of Transplant Recipients, and the National Bone Marrow Donor Registry and with developing and implementing national programs to increase the rates of organ, tissue, bone marrow, and blood donation. HRSA’s extramural grants program examines a wide array of interventions to increase organ donation rates. The grants are generally funded for 3 years, with annual reviews. The grants program targets key points across the donation continuum. The primary emphasis is on the Social and Behavioral Interventions grants program, which seeks to raise public awareness of organ donation and generate public commitment. Related to this effort,

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Organ Donation: Opportunities for Action HRSA has piloted the Media-Based Interventions program to increase the rates of organ donation by members of minority populations. At the other end of the donation continuum, HRSA has previously funded the Clinical Interventions grant program (personal communication, J. Perdue, HRSA, 2005). Between fiscal years (FY) 1999 and 2005, the Social and Behavioral Interventions program funded 61 projects, with total funding of $49.5 million (personal communication, M. Ganikos, HRSA, 2005). First-year funding levels for new grants have significantly decreased in recent years, from a high of greater than $3.3 million in FY 2003 to approximately $1 million in FY 2005 and an expected $1.25 million in FY 2006. This decrease in funding has placed severe restraints on the grant program. Social and Behavioral Interventions HRSA’s major extramural research grant program focuses on social and behavioral interventions in schools, workplaces, and community locations. Roughly 40 percent of the projects have focused on minority populations, principally African Americans and Hispanics (personal communication, M. Ganikos, HRSA). One study, for example, is evaluating the use of community projects and individually tailored interventions on donor decision making. Another study is evaluating how effectively peer educators in workplaces increase employees’ intent to donate. Despite the diverse content among Social and Behavioral Interventions program grants, all such projects approved by HRSA must include several key components: a consortium of researchers and transplantation organizations to bridge the gap between academic research and the service-oriented work of transplantation professionals; a rigorous evaluation component; and precise performance measures, such as an increase in consent rates for organ donation or an increase in declarations of intent to donate. An HRSA technical review panel that includes three reviewers—a donation and transplantation specialist, a research and evaluation specialist, and a research reader—reviews each grant application. To guide the applicants, HRSA regularly offers programs on grant application preparation, issues related to research with human subjects, and grants management. During the grant project periods, HRSA offers additional technical assistance, including yearly project presentations and work group discussions to review the lessons learned and problem-solving techniques. HRSA research has examined the effectiveness of a number of donation strategies, many of which have been incorporated into the work of the

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Organ Donation: Opportunities for Action Organ Donation Breakthrough Collaboratives. These include the value of early referrals (timely hospital reporting of deaths to an organ procurement organization [OPO]), the use of appropriate and effective requesters, the incorporation of family support counselors into the consent process and the provision of bereavement assistance, and contacts with families with the expectation of donation (the presumptive-consent or expected donation approach). Media-Based Interventions In FY 2004, HRSA designated $3.6 million in grants to media-based organ donation projects (personal communication, M. Ganikos, HRSA, 2005). The seven grant recipients included donor networks, foundations, and medical centers. The grantees used the funds to raise awareness and encourage organ donation through the use of radio, television, and print advertisements; public events; and outreach efforts. This program focused on audiences comprising minority populations, in particular, by using targeted media and community events to reach African-American and Hispanic groups. For instance, HRSA supported almost 19,000 traffic advertisements in 15 African-American and Hispanic markets. HRSA is evaluating the effectiveness of media-based interventions and may continue this program in the future. Clinical Interventions The goal of the Clinical Interventions grants program is to find clinical strategies that speed up organ placement, such as the more efficient identification of potential donors. Specifically, HRSA provides 3-year Clinical Interventions grants for research that results in measurable increases in transplantation rates. Between FY 2002 and 2004, HRSA provided roughly $9 million in grants for 11 projects that used clinical interventions to increase organ procurement (personal communication, J. Perdue, HRSA, 2005). The FY 2005 budget ($2.5 million) and the FY 2006 budget ($1 million) included only noncompeting funds to maintain these efforts, during which time the program was and is being evaluated. Grant Summary Table E-1 categorizes HRSA’s grant projects from 1999 through 2004 by intervention type and target audience. Several of the projects could have been categorized under several headings, such as “public education” and “registry enrollment,” as public education projects often aim to increase

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Organ Donation: Opportunities for Action TABLE E-1 HRSA-Funded Extramural Research, 1999 to 2004 Intervention Type Target Populationa General Public Minority Populations Total Public education 9 (13) 25 (37) 34 (50) Registry enrollment 9 (13) 2 (3) 11 (16) Hospital-based 16 (24) 1 (1) 17 (25) Living donation or other 5 (7) 1 (1) 6 (9) Total 39 (57) 29 (43) 68 (100) aData represent the number of projects (percentage of all projects). registry enrollment rates, as well as improve public attitudes toward donation more broadly. Half of the funded projects can be categorized as public education, although many are focused on specific subpopulations (for example, college students and Asian Americans). Hospital-based interventions constitute approximately one-quarter of the projects. Projects in this category attempt to increase organ donation consent rates by improving the care of dying patients and the organ donation request process. The advantage of hospital-based research is that it is relatively straightforward to translate findings into practice. Many of the interventions are inexpensive or even costless, and mechanisms that are already in place, such as HRSA’s Organ Donation Breakthrough Collaboratives, can be used to disseminate the results. Hospital-based research also has some important constraints. The Breakthrough Collaboratives have led to rapid changes in donor identification and requesting practices, making it difficult for future studies to isolate the impacts of specific interventions. Also, organ donation is a relatively rare event, even at large hospitals, so it is not easy to accrue adequate sample sizes. More than one-half of the funded projects are for studies that examine the impacts of public education and registry enrollment programs on organ donation rates. For example, the New Jersey Sharing Network, New Jersey’s OPO, tested various educational and promotional interventions to encourage the workers employed by 45 large employers to sign donor cards and discuss organ donation with their family members. Many of these projects target minority groups. For example, the Arizona Kidney Foundation conducted a media campaign to increase the number of people willing to donate and to promote favorable attitudes toward donation among Hispanics. As OPOs move toward first-person (donor) consent, education programs, particularly those that promote enrollment in registries, will become more important. Public education interventions are costly, however, and

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Organ Donation: Opportunities for Action the potential for the uptake of study findings is limited in the absence of an ongoing public education campaign. Other examples of innovative research efforts include the work of researchers at the University of Pennsylvania who are examining the impact of a presumptive-consent (expected donation) approach on organ donation consent rates (see Chapter 4). Researchers at the University of Wisconsin examined the impact of the implementation of protocols for donation after circulatory determination of death. The committee found that some of the grants test similar strategies for increasing the rates of organ donation. Although some amount of replication is inevitable and even desirable, it is important that HRSA develop mechanisms to ensure that, over the long run, the projects build on one another by incorporating the lessons learned and adding new features to be examined. EVALUATING HRSA’S EXTRAMURAL RESEARCH GRANTS Evaluating the impact of a program or an initiative to improve the rates of organ donation, particularly those that are community or behavior based, is particularly challenging in the midst of the many external factors that can also influence perceptions of and decisions about organ donation. Furthermore, the actions regarding organ donation could occur long after the intervention. For an individual, his or her actions regarding organ donation might follow directly after participation in an intervention (such as by signing a donor card) or might occur years after the intervention (for example, as part of a family decision to donate the organs of a loved one after his or her death). The challenges involved in evaluating organ donation initiatives are similar to those faced in evaluating interventions for other public health issues, including youth smoking, underage drinking, obesity prevention, and diabetes prevention (NRC, IOM, 2003; IOM, 2005). For many public health programs, evaluation is an afterthought that is not built into or budgeted into the program from the outset. One of the strengths of DoT’s extramural grant program is that the grants are required to have a strong evaluation component. Furthermore, the team submitting the grant proposal must be constituted as a consortium that includes as a partner an academic institution or some other research institution. The use of the evaluation expertise from the early stages of a project and throughout the project is of great benefit in strengthening the implementation of an evaluation plan. HRSA also provides extensive technical assistance. Grantees are required to attend two technical assistance workshops during the first year of the project and one workshop during subsequent years. The workshops

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Organ Donation: Opportunities for Action are provided as an opportunity to assess progress, discuss outcome measures, and consider various evaluation methods. It is important that HRSA better define the purpose of the grant program and expand the scope of projects considered for funding. The large number of funded public education grants raises the issue of whether the major aim of HRSA’s grant program is research or whether the program serves as a vehicle for funding public education on an ad hoc basis. Currently, funded projects must have the potential to “i) increase organ donation and ii) improve understanding of how to increase organ donation.” The first of these two goals severely limits the types of projects that can be funded, as projects that address only the second goal are ineligible for funding. Yet, projects of this nature may, in the long run, lead to system-wide changes that have a large impact on donation rates. The limited resources for grant funding available to the Division of Transplantation in recent years have hindered the ability to explore additional innovative approaches and to scale up those interventions that have been found to be promising (see Chapter 1). The Division has leveraged the opportunities presented by the Organ Donation Breakthrough Collaboratives to incorporate new findings into the work of the hospitals and OPOs participating in the Breakthrough Collaboratives. The committee believes that the Division of Transplantation should receive increased funding for its extramural program to support additional grants focused on innovative approaches to increasing organ donation rates (these projects, for example, examination of families’ acceptance of first-person consent, may or may not have a direct impact on donation) as well as projects whose findings are easy to translate into practice (for example, improvements to the request process and improvements to workplace registry programs). Ideally, projects would meet both requirements, but in practice there is often a trade-off between innovativeness and replicability. Furthermore, HRSA should critically assess the findings of the studies that have resulted from previous grants and similar studies; give priority to projects that are highly innovative, replicable, or both; and consider funding some projects that will increase the knowledge base and serve as a foundation for future interventions or policy changes. REFERENCES IOM (Institute of Medicine). 2005. Preventing Childhood Obesity: Health in the Balance. Washington, DC: The National Academies Press. NRC (National Research Council), IOM. 2003. Reducing Underage Drinking: A Collective Responsibility. Washington, DC: The National Academies Press.