Report on Social and Behavioral Interventions to Increase Organ Donation Grant Program 1999-2004

Overview and Summary of Report

Overview of the Division of Transplantation (DOT) Grant Program
In spite of its relatively recent inception, the DOT grant program has yielded promising replicable programs with demonstrable impact on improved public opinion and knowledge about organ donation, increased willingness to donate (as demonstrated through signed donor cards or through donor registry participation), increased rates of referrals of potential donors to OPOs by hospitals, and increased family consent rates for the donation of a loved one’s organs. In turn, these interventions have yielded an impressive number of additional organs available for transplant, ultimately saving the lives of many people on the transplant waiting list.

Generally speaking, public education efforts in the area of organ donation, probably because of their “unproven” effects on public behavior, are largely under-funded. To address the need to systematically discover the best methods for increasing the public’s willingness to donate organs (and to express their wishes to donate to family members), DOT began to fund “Model Social and Behavioral Interventions to Increase Organ Donation” in 1999. Projects had to be theory-based and have a rigorous evaluation component. One of the most unique aspects of the program is its requirement to establish a consortium of organ procurement professionals and researchers, assuring that programs would be faithful to the realities of public education about organ donation while maintaining methodological rigor. As a result, a pattern of findings has emerged that should provide a blueprint for creating more effective outreach campaigns that are linked to definitive outcomes ranging from increased knowledge and improved attitudes toward organ donation, and increased intent to donate to actual demonstrated behavioral willingness to donate (by signing a donor card or joining a donor registry) and ultimately, actual rates of organ donation.

The scope of this report
This report reviews grant projects that were funded in fiscal years 1999, 2000, and 2001 which submitted final reports by December, 2005 containing sufficient evaluation procedures that the level of success of the program could be assessed. It should be noted that many projects file for one-year no-cost extensions because the short 3-year time frame is often inadequate to fully complete the project and/or evaluation procedures. However, where solid preliminary data exist from ongoing projects, this information is integrated into the report.

Overview of Interventions
The establishment of public campaign principles to encourage donation have occurred only recently, given that only the projects initiated in the years 1999 - 2001 have been completed. One finding that has been clear is that organ donation promotion efforts cannot rely on principles thought to be effective with other health-related behaviors for several reasons, including:

• Donation happens only after death (no immediate consequences)
• Donation, the behavior that we are trying to encourage, does not (directly) benefit the donor
• As part of our promotional efforts, we require members of the public to think about their own deaths and to talk about their own deaths with their loved ones.

Contrast these conditions with traditional health promotional efforts such as smoking cessation, drug abuse prevention, and diet and exercise and it becomes clear that organ donation is indeed a unique health issue that requires innovative approaches.

The interventions funded by DOT can be divided into two general categories: Public education and hospital-based interventions. Public education projects include:

• Community outreach campaigns, many of which were focused on a particular minority community
• Mass communication campaigns, virtually all of which also include supporting grassroots efforts
• Campaigns involving the Division of Motor Vehicles as the site of organ donation decision-making
• Worksite campaigns
• Professional education for members of occupations that impact the public’s willingness to donate, including doctors, lawyers, and funeral directors
• School-based interventions for high schools (including driver’s education classes) and universities

Hospital-based interventions include:

• The development of in-house coordinator programs
• Transplant coordinator training, including communication practices during the requesting process, cultural awareness, and family grief processes
• System-wide hospital interventions to increase acceptance of organ donation

Summary of Theories Used as Foundation of Interventions
A number of theories have been used as the foundation of DOT-funded interventions. The most common primary theories include the theory of reasoned action, theory of planned behavior, the transtheoretical model (aka “the stages of change”), and the diffusion of innovations. At their core, most of these theories posit that behavior change (the willingness to sign a donor card, tell family members about their donation decision, consent to donation, or engage in improved potential donor referral behaviors) is a function of people’s attitudes toward the behavior, feeling that they are actually able to perform the behavior, and their perceptions that their social group supports the behavior.

Overview of the Most Effective Methods/Evaluative Techniques
The two most solid evaluation techniques used in the grant-funded programs are:

1. Tracking an entire population’s actual behaviors before and after and intervention (e.g. increases in DMV donor registries, number of referrals, family consent rates) in both control (no campaign or program to improve organ donation-related outcomes) and intervention locations.
2. Random sample surveys before and after an intervention, comparing responses between the group/location that receives the intervention and another similar group that did not. It should be noted that the random sample and the number of people who respond to the survey must be large enough to make valid comparisons between the two groups.

Summary of Most Important Findings from the DOT Grant Program: What Works
General findings:

• The involvement of a researcher from the start of project planning process yields the most valid program evaluation.
• University-based researchers (rather than commercial research firms) generally have more experience with rigorous program evaluation research. Academic researchers often have both more experience with and motivation to write peer-reviewed publications, which enhances the dissemination of findings of the DOT program.
• The Principal Investigator or de facto project leader (sometimes the Principal Researcher or co-Investigator) should be either local or on-site. Long-distance management of large project does not allow for adequate oversight of project activities, often leading to missed deadlines and a lack of adherence to the original project plan. Having an experienced leader at the helm of a project also appears to enhance the success of a project. Determination and problem-solving skills are a necessity for overcoming obstacles or re-negotiating access to intervention sites.
• Assembling an external advisory board with representation from all stakeholders appears to enhance the quality of the intervention that is ultimately developed for any given population.
• Although it is easy to believe that improving knowledge about organ donation (or the grieving process, or brain death, or the necessity of notifying OPOs of imminent death of a potential donor) will translate into actual behavior, it is important to take the intervention one step further. The targeted population must have this information translated into very practical, specific strategies that directly address the exact goal of increasing consent rates, referrals, etc., through scripting, communication training (practiced through role-playing), or by telling people exactly how they can become organ donors.

Campaigns centering on communities or the workplace:

• Campaigns that include an interactive component with volunteers or outreach workers trained to address myths common in each community appear to be more successful.
• Culturally similar outreach workers are an important element in successful interventions that target minority communities.
• Using appropriate settings within the community (e.g. churches and doctors’ offices)—churches helps to overcome perceptions that donation runs counter to religious beliefs or that organ donation is part of a corrupt medical system. It is worth noting that medical mistrust is generally directed toward large medical institutions or unknown medical professionals rather than family practitioners.
• Developing partnerships with ethnically-specific community organizations, and developing a consistent presence at virtually all major events central to a minority community enhances the success of minority campaigns.
• Well-placed interactive kiosks offer the opportunity for people to acquire information about organ donation and, in the case of some states, the opportunity to sign up to become a donor.
• DMV-based registries offer an excellent opportunity to monitor the success of community outreach activities and media campaigns because they provide immediate evidence of increased willingness to donate.
• Community outreach campaigns work best when paired with media campaigns (and vice-versa).

Media campaigns:

• A media campaign alone may not be enough to produce significant behavioral change.
• Campaigns targeting Hispanics should use Spanish-language messages with media placement in popular Spanish-language television programs
• People featured in campaigns should be ethnically/culturally similar to the targeted population.
• A single, general population campaign is unlikely to improve minority population outcomes. Parallel campaigns may be necessary.

School-based settings:

• A comprehensive curriculum needs to be presented to teachers who are themselves exposed to training/education about organ donation.
• Gaining the involvement of parents through a student assignment to conduct “parent interview” helps to expand the influence of a school-based intervention.

For hospital-based settings:

• In-house coordinators have demonstrated high effectiveness in improving organ donation-related outcomes (referrals, cooperation with hospital staff, consent rates) when compared to traditional, OPO-based coordinators.
• Specific communication training of requestors, health care providers, and other hospital personnel such as social workers or chaplains should include scripting and role-playing, especially with standardized patients, in order to improve targeted outcomes.
• Culturally-similar requestors have demonstrated a significantly positive impact on consent rates.