Spreading the Gift of Life: Organ Donation Breakthrough Collaborative

There are few health crises that resonate as powerfully as the fact that patients routinely die while awaiting an organ transplant — seventeen every day in the US.  The overall transplant waiting list actually exceeds 80,000. As if these figures were not troubling enough, some of the strategies debated to address the shortage of transplantable organs are disturbing in their own right. In particular, proposals to introduce financial incentives to attract donors raise thorny ethical and humanitarian issues.
It turns out that such tactics are unwarranted. Scientists and providers focused on this problem have identified significant untapped resources that could vastly reduce the waiting list and save thousands of lives a year. The work is the product of a national initiative called the Organ Donation Breakthrough Collaborative, launched in 2003 by the Secretary of Health and Human Services (HHS), Tommy G. Thompson, and based on IHI’s Breakthrough Series change methodology.
In the Collaborative, teams of physicians, nurses, hospital executives, and leaders from key organizations with a role in organ donation and transplantation have been aggressively and successfully challenging the status quo. The group has demonstrated that, if all parties involved follow proven best practices, the supply of healthy organs available to patients in need would increase dramatically. In fact, by doing things more effectively and following uniform standards, 50 percent more patients could receive the gift of life.
The Challenge
In the US today, only 43 to 46 percent of potential organ donors actually become donors. This stunningly low rate results from a combination of factors, many of which — the Collaborative has revealed — are very much in our control. 
In part, there is public misperception about the donor card many of us carry. Although policies are improving, today, in many states, unless you have clearly expressed your wishes to be an organ donor to your family, it is unlikely that it will happen, even if you carry a donor card. Health care providers almost uniformly go to great efforts to find next of kin and secure their consent. 
On a broader scale, the system for managing the organ donation process is inconsistent and often quite tenuous. Enhancing the infrastructure in which dedicated health professionals operate is an area of great opportunity, and is therefore the principle focus of the Collaborative.
A Finely Tuned Orchestra
The process that connects organ donors to patients awaiting transplant is often described in metaphoric terms: a ballet of intricately woven dances or an orchestra of finely tuned instruments. Of the roughly 6,000 hospitals across the US, a smaller set of institutions, primarily academic medical centers with trauma facilities, tend to treat the sickest and most seriously injured patients who are the most likely candidates for organ donation. In fact, 50 percent of potential organ donors originate in some 200 hospitals, and 90 percent are clustered in about 850 hospitals — many of which are also transplant centers.
Connecting donor hospitals and transplant centers is a network of 59 Organ Procurement Organizations (OPOs). These are liaison organizations designated by the US federal government to coordinate every aspect of the organ donation process for a given region of the country. 
The OPOs are linked to the national database of patients awaiting transplant, as well as to external groups with a role in the process: medical examiners, state police, registries of motor vehicles, and so on. A phone call from a hospital to the local OPO contact about a patient’s imminent death sets in motion the exacting process by which a potential organ donor is matched with a compatible transplant recipient at the top of the waiting list. The OPO coordinates all logistics, medical and regulatory issues, and, importantly, supports the families of organ donors during the immediate crisis and through long-term aftercare services.
The complexity of the system perhaps helps explain the huge variation in rates of organ donation among US hospitals. As the chart below shows, success rates range from zero to 100 percent. According to Ginny McBride, Collaborative Improvement Advisor in the lead organization, the Division of Transplantation within HHS’s Health Resources and Services Administration (HRSA), “The Collaborative is designed to close the gap between the number of eligible donors and the number of actual donors.” This is known as the conversion rate.

Ending this disparity is the purpose and passion of the Organ Donation Breakthrough Collaborative. Its ambitious target is to bring the nation’s largest hospitals up to an average conversion rate of 75 percent. The insights gained in the Collaborative are being rapidly shared with hospitals and OPOs nationwide, says McBride “so they might adopt and replicate the lessons learned.”


From Best Practices to Common Practices
The Collaborative began in September 2003 and runs through April 2004. It includes more than 500 participants, including representatives from 95 hospitals and 42 OPOs, working in 49 teams. The teams are following test cycles in the Plan-Do-Study-Act (PDSA) improvement model. The purpose is to implement a “change package” in each participating organization, a blueprint composed of best practices of the highest performing hospitals and OPOs.


The change package spells out activities in specific agreed-upon areas. For example, it guides teams in identifying organ donation champions within hospitals who can help overcome barriers, increasing visibility of OPO staff within donor hospitals, and educating hospital staff on clinical triggers in very ill patients that warrant referral to the OPO. The overarching goal is to foster a culture of excellence and devotion to continual improvement among member institutions. And every pursuit is based on data-driven results; all teams commit to using standard measures to track and report on their progress.


The results thus far have been quite encouraging. Two process measures, in particular, have been steadily improving. The rate of “timely notification” of potential donors in hospitals to OPOs has gone from 48 percent to 75 percent; similarly, the rate of “appropriate requester” — the success in ensuring that the contact person identified as the most skilled and capable is the first to approach a donor family — has gone from 76 percent to 94 percent.


Relationships Drive Success
While data is the backbone of the Collaborative, the heart and soul is teamwork.  The initiative has united groups from throughout the organ donation community that share a life-saving mission, but have not generally worked together to fulfill it. The teams include OPO staff, critical care nurses, neurosurgeons, hospital leaders, medical examiners, bioethicists, social workers, patient organizations, and even chaplains.


The power of the bonds developed among these varied participants is the most encouraging outcome of the Collaborative, according to leaders in the initiative.  Kevin O’Connor, Director of Donation Services at the New England Organ Bank (NEOB) and a Collaborative faculty member, says, “The most important contribution of this project is that it has woven together teams of OPOs and hospital staff.” He credits this process with solidifying the system, which he describes as “a three-legged stool with donor hospitals, transplant centers and OPOs each forming a leg.” The key to success, he adds, is the stability ensured by collaboration among these groups.


O’Connor’s colleague and also a Collaborative faculty member, Anne Marie Lyddy, Director of Hospital Relations, Education and Quality Improvement at NEOB, is convinced that strong alliances are the cornerstone of a successful organ donation network. She says, “It’s all about relationships, and that’s why the Collaborative has been so great. It has really cemented relationships.” In particular, Lyddy notes the importance of partnering with donor families, which, in turn, depends on hospitals and OPOs working in unison. She adds, “I can see it building bridges as we spread.”


Keeping the Momentum
HRSA is now planning a second and larger Collaborative, which will run from fall of 2004 through spring of 2005. The goals are to solidify the gains of the initial phase and spread best practices to hundreds of other hospitals. This will be done through a new series of meetings and conferences, enhanced training materials and measurement tools, as well as a mentoring and coaching program for new members.


Helping to empower the growing community of change agents in the organ donation community is a key parallel drive toward standardization. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has strongly endorsed the Collaborative. Through its involvement, the group has formally committed to incorporating organ donation performance in the set of quality standards by which it rates hospitals.


This, says NEOB’s Lyddy, brings enormous potential. She says, “It means that organ donation becomes part of the fabric of an institution.” Achieving this validation, combined with continued achievements of the Organ Donation Breakthrough Collaborative, will ensure that thousands of patients are given a new chance in life.  That’s a quality target difficult to beat.

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