Rheumatology’s Architect

Most members of the ACR know something about the ACR Research and Education Foundation (REF). It’s likely, however, that many don’t know as much as they should, considering the scope of its programs, its recent dramatic growth in resources, its ambitious agenda, and its critical role in creating a future for the profession of rheumatology.

This is the fifth consecutive year in which I’ve had the privilege of participating in the meetings of the REF’s board of directors, in the course of filling various roles for the REF and the ACR. The most recent board meeting, held January 18–19, 2008, encapsulated for me just how far the REF has come, and how much further it plans to go.

REF and ACR: Partners in Rheum

Leslie Crofford, MD

James O’Dell, MD

Mike Weisman, MD

REF presidents serve two-year terms, and are members of the ACR’s Executive Committee. ACR officers participate in the REF board as voting members (secretary and treasurer) or ex officio (ACR president and president-elect). In this way, even though the REF is a distinct entity, it carries out its work in close coordination with the ACR. REF president Leslie Crofford, MD, recently succeeded James O’Dell, MD, who was preceded by Mike Weisman, MD. These three share a passion for the mission of the REF, and their leadership has been a remarkable blend of successful innovation while simultaneously strengthening the existing core functions of the REF.

The staffs of the ACR and the REF are also structured to balance the independent role of the REF with the advantages of organizational support from the ACR. The REF staff, ably led by Steve Echard, CAE, includes specialists in grant review, grant management, and development, but shares staffing with the ACR in such areas as communications, accounting, and information technology. The REF is a lean organization—approximately 85% of its expenditures flow out the door as research grants, with the remaining expenses in the categories of fundraising, peer review, grant administration, and infrastructure. This puts the REF among the ranks of the most highly rated of charitable organizations, in terms of how effectively the donor’s dollar is put to use.

Just as the ACR has standing committees in all key areas, the REF has a Scientific Advisory Council (SAC) that sets up the grant portfolio and supervises the study sections that review the grant applications, and a Development Advisory Council that figures out how to raise the money the SAC so eagerly spends. The Committees on Finance and Nominations are joint committees with the ACR. A variety of task forces are also hard at work on other functions of the REF. The REF’s governance structure, which is modified every few years in a strategic planning process, has proven to be nimble and effective in serving the mission of a rapidly growing organization.

REF’s Mission and Goals

The goals of the REF are to attract highly qualified individuals into rheumatology and the allied health professions, to foster academic career development, and—added more recently—to support targeted research in rheumatic disease. The portfolio of grants that are distributed by the REF to more than 100 recipients per year ranges from clinical or research preceptorships for medical students, to the Physician-Scientist Development Award for rheumatology fellows, to the grants awarded to established investigators for the most innovative research on RA, as our targeted research initiative, Within Our Reach, begins to bear fruit. And those are just a few examples of the more than 25 categories of grants that the REF now funds.

At its January 2008 meeting, the REF board voted to create a new grant category, the Rheumatology Investigator Award, which will provide substantial support for career development of rheumatology junior faculty who are launching their research programs. Although a thorough review and overhaul of all REF grant mechanisms is underway, the REF board saw an urgent need for this new grant mechanism and put it on the fast track; the first round of proposals will be due this summer and will be funded in 2009.

Progress in the Within Our Reach campaign was also reviewed at the meeting. Halfway through the campaign, the REF has raised nearly $20 million dollars, more than 60% of its goal. Fifteen two-year grants were awarded in 2007, representing an expenditure of $6 million dollars, and another round of applications has already been received for review. The REF is still building its base of patient-donors, a process in which all members of the ACR can participate. And the ACR’s Committee on Research is beginning to develop the REF’s next targeted research initiative, which is due to be presented to the combined boards of the ACR and REF in August 2009.

The decision to embark on large-scale targeted research was a bold step for the ACR and the REF, but it did not come at the expense of our training and career development programs. Indeed, the REF, blessed by assets fourfold greater than it had just five years ago, has created an endowment to guarantee permanent funding of its core missions, and is on target to build that endowment to $25 million by 2010. New goals will be framed as we near that initial target. Don’t be surprised if we set our sights on a $100-million endowment by 2020 or sooner.

You might wonder why an endowment of such proportions is necessary. Consider that much of the growth of the REF has been fueled by the pharmaceutical and biotechnology industries’ interest in strengthening the field of rheumatology through participation in the REF Industry Roundtable. Becoming a roundtable member requires significant contributions to the REF. It’s difficult to know how long these companies will be willing or able to provide this support, and it would be a serious error to assume that it will continue in perpetuity. Consider also that expenditures by the NIH and charitable foundations for rheumatologic research include only limited—and shrinking—funding for rheumatology trainees. And consider that our manpower projections (which the REF board studied carefully in January) compel us to create mechanisms to train more rheumatologists than we are currently. The issue is not whether we need an endowment, but how large we can make it.

Everyone Can Help

If you are one of the majority of ACR members who is engaged in clinical practice outside of an academic unit, you might wonder why the REF is important to you. The activities of the REF are essential to the health of the academic rheumatology units, which, in turn, is the key to sustaining our profession. In addition to guiding young physicians and health professionals towards a career in rheumatology and preparing them for clinical or academic practice, specialized disease-focused centers localized in academic institutions provide education, referral opportunities, and clinical research that defines best practices for our most challenging patients. Only a few years ago, barely more than 100 trainees per year were entering rheumatology fellowships, including few U.S. medical graduates. By developing new mechanisms to fund training for clinical fellows and expanding research training support, the REF played a major role in addressing this crisis. Today, about 180 physicians enter rheumatology fellowship programs each year, most of whom are U.S. medical graduates, and the number of fellows training in pediatric rheumatology units has more than doubled. We all know that a significant workforce shortfall exists nonetheless, and will get worse unless we take further action—but just imagine how much worse this might be if not for the vision of the REF leaders, the aggressive implementation of new programs, and the generous support of those who have donated to the REF.

The REF’s task is to build the future of rheumatology, and it is the responsibility of every member of the ACR to support and participate in the work of the REF. Go to the REF Web site, www.rheumatology.org/REF, and find out what the REF is up to. You can also become acquainted with individual REF success stories highlighted in the pages of TR. Donate every year, and consider increasing your donor level—you’ll even get rewards, such as access to the donors’ lounge at the ACR meeting. Let your students and residents know about the REF and its multiple mechanisms that help trainees enter rheumatology. Finally, consider becoming involved in patient-targeted fundraising for the Within Our Reach campaign or for the other programs of the REF. We have no shortage of challenges to deal with in the present, some of them frustrating and stubborn, but in the process of creating our future we transcend the present and leave an enduring legacy.

Dr. Fox is president of the ACR. Contact him via e-mail at [email protected].