Rehabilitation Medicine Summit: Building Research Capacity.Executive Summary

Walter R. Frontera, MD, PhD, Marcus J. Fuhrer, PhD, Alan M. Jette, PT, MPH, PhD,

Leighton Chan, MD, MPH, Rory A. Cooper, PhD, Pamela W. Duncan, PhD, John D. Kemp, JD,

Kenneth J. Ottenbacher, PhD, P. Hunter Peckham, PhD, Elliot J. Roth, MD, Denise G. Tate, PhD

From Harvard Medical School/Spaulding Rehabilitation Hospital, Boston, MA(Frontera); National Institutes of Health, Bethesda, MD (Fuhrer); Boston University,Boston, MA (Jette); University of Washington, Seattle, WA (Chan); University ofPittsburgh, Pittsburgh, PA (Cooper); University of Florida, Gainesville (Duncan);Powers Pyles Sutter & Verville PC, Washington, DC (Kemp); University of TexasMedical Branch, Galveston, TX (Ottenbacher); Case Western Reserve University,Cleveland, OH (Peckham); Rehabilitation Institute of Chicago, Chicago, IL (Roth);and University of Michigan, Ann Arbor, MI (Tate).

No commercial party having a direct financial interest in the results of the researchsupporting this article has or will confer a benefit upon the authors or upon anyorganization with which the authors are associated.Correspondence to Walter R. Frontera, MD, PhD, SpauldingRehabilitationHospital,

125 Nashua St, Boston, MA02114, e-mail: . Reprintsare not available from the author.

0003-9993/06/8701-10425$32.00/0

doi:10.1016/j.apmr.2005.10.021

ABSTRACT. Frontera WR, Fuhrer MJ, Jette AM, Chan L,Cooper RA, Duncan PW, Kemp JD, Ottenbacher KJ, PeckhamPH, Roth EJ, Tate DG. Rehabilitation Medicine Summit: BuildingResearch Capacity. Executive summary. Arch Phys Med Rehabil2006;87:148-52.The general objective of the “Rehabilitation Medicine Summit:Building Research Capacity” was to advance and promoteresearch in medical rehabilitation by making recommendationsto expand research capacity. The 5 elements of research capacitythat guided the discussions were researchers; researchculture, environment, and infrastructure; funding; partnerships;and metrics. Participants included representatives of professionalorganizations, consumer groups, academic departments,

researchers, governmental funding agencies, and the privatesector. Small group discussions and plenary sessions generatedan array of problems, possible solutions, and recommendedactions. A post-Summit, multiorganizational initiative is calledfor to pursue the agendas outlined in this report.Key Words: Physical medicine; Rehabilitation; Researchpriorities.

THE ADVANCEMENT OF MEDICAL science depends onthe production, availability, and utilization of new informationgenerated by research. A successful research enterprisedepends not only on a carefully designed agendathat responds to clinical and societal needs but also on theresearch capacity necessary to perform the work. Research thatis likely to enhance clinical practice presupposes the existenceof a critical mass of investigators working as teams in supportiveenvironments. Unfortunately, far too little research capacity

of that kind exists in rehabilitation medicine to ensure a robustfuture for the field. The “Rehabilitation Medicine Summit:Building Research Capacity” was conceptualized as a way offashioning a long-term plan to foster the required developments.

OBJECTIVES

The general objective of the Summit was to advance andpromote research in medical rehabilitation by making recommendationsto expand research capacity.

More specific objectives were as follows: (1) to bring together

leaders in medical rehabilitation research to characterizecurrent research capacity in the field and to identify obstaclesto expanding that capacity, (2) to propose specific actions andmechanisms to enhance research and the development of capacity,(3) to formulate an action agenda for use by stakeholdersin medical rehabilitation to enhance existing research andtraining programs or to create new ones, and (4) to stimulatefederal agencies and foundations to support the needed elementsof rehabilitation research and training. Although thepurpose of the summit was not to discuss specific researchagenda, the above objectives were considered in the context of

5 research categories: basic science, clinical research (includingclinical trials), outcomes research, health services research,and engineering and technology development.

RESEARCH CAPACITY: OPERATIONALDEFINITION AND ELEMENTS

For the purpose of the discussions, building research capacitywas defined as “a process of individual and institutionaldevelopment which leads to higher levels of skills and greaterability to perform useful research.”1 Five elements of researchcapacity were identified and used to guide the pre-Summitwork and the Summit discussions. These included (1) researchers(their training, mentoring, recruitment, and retention; the

value of a career in research and incentives for research); (2)research culture, environment, and infrastructure (academicinstitutions, creation and maintenance of core facilities, role ofchairpersons and deans, collaborations, institutional researchadministration and social culture, policies governing incentivesand job security); (3) funding (sources, advocacy for changingpolicies, peer-review procedures, funding mechanisms, grantsmanship

and fundraising, timing of funding requests, conflicts ofinterest); (4) partnerships with other disciplines and disabilityconsumer groups (the purposes of these partnerships; choices ofresearch topics, disciplines, and consumer groups; modes of participation;potential conflicts of interest when partnering withindustry); and (5) the metrics of research capacity (quality andquantity of the pool of available researchers, productivity of

their research and its impacts).

METHODOLOGY

Several important activities took place before the Summitconvened. The program committee had extensive discussionsabout existing research capacity. Key bibliographic referenceswere identified on the topic of building research capacity andmade available to all participants. A special article on thehistory of rehabilitation research was commissioned. Recognized experts were invited to write articles on each of the 5elements of research capacity to serve as a basis for discussionduring the Summit. These articles were peer reviewed, and 5

additional experts wrote detailed responses to them. The researchcommittee of the AmericanAcademy of Physical Medicineand Rehabilitation (AAPM&R) conducted a survey ofresearchers in the field to identify problems of research capacityand their potential solutions. Several funding agencies submittedreports of their efforts to build research capacity. Finally,participants were given access to a website where all keyinformation was posted, including the articles mentioned earlier.

The Summit consisted of keynote lectures, paper resentations,and small-group working sessions; it took place in Washington,DC, on April 28 and 29, 2005. Invited participantsincluded leaders in the field, senior and junior researchers,department chairs, deans, research directors, professional organizations(n_12), government agencies (n_10), disabilityconsumer groups (n_6), and multiple medical specialties(n_7). For the group discussions, participants were dividedinto 10 small groups, with 10 participants per group, makingsure that different points of view were represented in eachgroup. Each element of research capacity was discussed independentlyby 2 different groups that were charged with identifyingproblems and solutions and with recommending actions.Their reports were integrated before the Summit’s finalsession, which was devoted to presenting the reports to thelarger group and to discussing additional recommendations.The following sections summarize the groups’ conclusions oneach of the 5 elements of research capacity. A more detailedsummary of the problems, solutions, and recommendationsidentified by the 5 integrated groups is available from the leadauthor.

PROBLEM IDENTIFICATION

Researchers

Capacity building requires the development of a pool ofwell-qualified researchers. To accomplish this task, issues suchas training, mentoring, and placing new investigators must beaddressed, as should other issues concerning the recruitmentand retention of established investigators. The ideal traineemust have a strong commitment to inquiry and the desire andskill to collaborate with others.

Defining the domain of medical rehabilitation research wassingled out as a paramount requirement for expanding researchcapacity. The field is inclusive by nature because it receivescontributions from the physical, biologic, psychologic, engineering,nd social sciences—hence, the difficulty in delineatingit. This predicament is reflected in the different conceptualmodels that are frequently invoked in discussing the field,including the Institute of Medicine’s enabling-disabling model2and the World Health Organization’s International Classificationof Functioning, Disability and Health.3

Difficulties in developing, promoting, and retaining greaternumbers of skilled rehabilitation researchers were highlightedas well. Far too few programs exist that provide optimaltraining in medical rehabilitation research. Reasons for thedearth of training opportunities include a lack of training fundsrom government agencies and private institutions, a paucity ofprogram models for fostering interdisciplinary collaboration, alack of appropriate mentoring coupled with standardized trainingcurricula for preparing trainees to be competitive as researchers,and inadequate attention to promoting the retentionof minorities, women, and people with disabilities.

Research Environment, Infrastructure, and Culture

Research environment, infrastructure, and culture represent amatrix of complex factors essential for excellence in generatingmedical rehabilitation research, in training and recruiting researchers,and in conducting research involving people withdisabilities.

A major problem is that research and scientific discovery are often unrecognized as institutional, organizational, and professionalcore values. In too many instances, scientific discoveryis not an explicit priority in the vision and mission statementsof clinical and professional organizations with national memberships.Consequently, the strategic plans of these organizationsdo not promote collaborative or interdisciplinary research,and they are not expressly supportive of the necessaryinvestments in scientific training, the development of grantwritingskills, and the mentoring of promising research faculty.The human and physical resources needed to accomplish these

tasks are unavailable in many academic rehabilitation environments.Mechanisms for recognizing research productivitythrough formal and informal evaluation and reward systems arefrequently lacking as well.

Funding

Significant funding must be specifically assigned to buildingresearch capacity. However, the current economic environmentin the United States is likely to result in flat or evenreduced funding for medical rehabilitation research, at leastin the near future. This unfortunate financial picture exists ata time of increasing need associated with the growing numberof people with disabilities and of unparalleled opportunitiesto improve their lives by means of new knowledgegenerated by research.

The biggest problem is lack of a coherent strategy for advocatingthe needed research support. Stakeholders in medicalrehabilitation research are fractionated in their efforts to obtainlarger expenditures. The austerity of the current funding environmentunderscores the importance of organizations bringingtheir advocacy efforts together under common goals.

The problem of generating adequate funding for medicalrehabilitation research exists at 3 levels. At the federal level,the field lacks visibility as being a worthy object of supportwhen strategic funding decisions are made. At the local level,only a handful of academic programs have the research infrastructurerequired to produce uccessful research, and very fewnew programs have been developed in the past decade. Thispartially reflects the fact that many academic medical centersinvest most of their resources in expanding the ability of theirextant programs to generate research funds, rather than indeveloping promising new programs such as ones in medical

rehabilitation. Finally, at the level of individual researchers,proposed research too frequently lacks the quality to meritbeing funded. Additionally, some researchers fail to take advantageof existing funding opportunities, simply because theydo not know of their existence.

Partnerships

Partnerships with scientists in other disciplines, academicdepartments, and institutions and with patients with disabilities,among others, are vital to enhancing the capacity for conductinghigh-quality, meaningful research. Several factors havelimited the development of those partnerships. Because of thediversity of stakeholders and stakeholder objectives, there is nocommon framework on which to build funding, policy, programmatic,and marketing messages regarding research. Furthermore,consistent efforts have not been made to ensure themeaningful participation of people with disabilities in the researchprocess.

Metrics

Concerted efforts to enlarge the capacity of medical rehabilitationresearch must be complemented by an ability to assessthat capacity over time to gauge progress. No constitutivedefinition of research capacity appears to have won broadendorsement in the health sciences literature, and little guidanceexists for deciding on the metrics and measures for itsprincipal domains. Notwithstanding the lack of precedence, themeaning of medical rehabilitation research capacity must beunderstood with precision if that capacity is to be rigorouslyand comprehensively assessed.

SOLUTIONS AND RECOMMENDED ACTIONS

Although each group worked independently on its assignedproblems, many of the solutions and recommended actionseach identified were quite similar. This section integrates thesolutions and recommended actions.

Coalition

Several discussion groups suggested the formation of a coalitionof professional groups and consumer organizations.This coalition would create a national agenda addressing theissues of funding, capacity-building needs, and public educationand awareness. It would develop specific objectives andaction plans regarding (1) funding targets for research andresearch training, (2) needed changes in funding agencies’policies and practices, and (3) initiatives to educate the publicabout the importance and societal benefits of rehabilitationresearch. It also would coordinate efforts to address thoseissues.

Training

A high-priority area is training new investigators. To accomplishthis goal, training curricula need to be created, andfunding needs to be expanded for rehabilitation research trainingprograms across disciplines and at multiple levels, including undergraduatestudents, students in professional training programs,faculty, and department chairs. Special efforts should be made torecruit and train women, students with disabilities, and minorities.

Career Paths

Researchers need support at different stages in their careers.Current funding sources fail to provide the needed continuity ofsupport as their careers evolve. To foster researchers’ developmentand their retention in the field, funding opportunitiesmust be increased for predoctoral students, postdoctoral fellows,junior faculty, and established faculty transitioning intonew investigative areas.

Partnerships to Conduct Research

To ensure its scientific importance and clinical relevance,rehabilitation research requires both interdisciplinary and multistakeholderpartnerships. Collaborations among researchersof different scientific and professional disciplines need to bepromoted and cultivated. The required initiatives must comefrom individual researchers and from professional organizationsthat encourage joint scientific meetings and discussions ofinterdisciplinary research issues. Partnerships are vital, too, toensure that rehabilitation research is informed by the perspectivesof its intended beneficiaries—people with disabilities,their family members, and rehabilitation practitioners. Principalinvestigators should implement participatory action research,making it an integral part of medical rehabilitation and disabilityresearch. Greater emphasis should also be placed on providingpeople with disabilities with the training and supportnecessary for them to assume leadership roles in rehabilitationresearch.

Infrastructure

Currently, only a handful of departments or centers have theresearch personnel, equipment, space, and support staff thatconstitute a strong infrastructure for medical rehabilitationresearch. Many more such programs must be established beforethe aggregate research capacity is commensurate withexisting knowledge needs. Inevitably, that will require hostinstitutions to invest in establishing new rehabilitation researchprograms or in strengthening ongoing ones. A growthstrategy should be pursued concurrently while building intrainstitutionalpartnerships that facilitate access to the infrastructureavailable to colleagues in other scientific andprofessional disciplines.

Message to Funding Agencies

Funding agencies do not assign sufficiently high priority tomedical rehabilitation research. Within the National Institutesof Health this can be rectified by establishing an independentinstitute dedicated to rehabilitation research. Actions areneeded as well to expand the participation of rehabilitationscientists in scientific review panels and to generate morerequests for applications that focus on interdisciplinary rehabilitationresearch. A far-reaching possibility is creation of anindependent agency for disability issues within the U.S. Departmentof Health and Human Services. Advocacy directed atfederal agencies must be complemented by initiatives thatincrease support from private-sector sources such as third-partypayers.

Rehabilitation Science Model

It is generally accepted that the field of rehabilitationresearch lacks a unified scientific model. A consortium ofexperienced researchers should be created to develop thismodel and to define the domains and boundaries of rehabilitationresearch.

Mission Statements and Strategic Plans

Scientific discovery is not always recognized as an institutionalor organizational core value. Professional organizationsshould include research as an important component of theirmission statements. This should be reflected in their strategicplans and used as a means to promote interdisciplinary andcollaborative research.

Metrics

Both long- and short-term perspectives are called for to meetthe challenges of assessing medical rehabilitation research capacity.The long-term perspective highlights the definitionaland operational challenges that must be addressed eventually ifthat capacity is to be rigorously conceptualized and comprehensivelyassessed. The short-term outlook emphasizes thatsome information gathering can and should begin immediatelyin the following 4 areas.

Rehabilitation research trainees. Information to be trackedincludes the number of funded postdoctoral positions availablein rehabilitation and the distribution of fellows across rehabilitationdisciplines; the proportion of trainees who come through research training programs and who become researchers—fulltime, part time, or none; the research products that the traineesgenerate; and trainees’ extramural and intramural levels offunding. Possible action steps include defining who is considereda core rehabilitation professional, exploring and usingexisting methodology where possible, and enlisting the cooperationof funding agencies to collect and share thisinformation.

Size of the rehabilitation research cadre. Information tobe tracked includes the size of academic departments relevantto medical rehabilitation (eg, number of research fellows, filledand unfilled faculty positions) and the amount of time rehabilitationprofessionals, broadly defined, spend in research (eg,half time or more, part time, or none). Professional organizationsshould be enlisted to collect this information on a regularand standardized basis.

Productivity. The information to be monitored includescitations of published articles, extramural and intramural levelsof research funding, and the types of research designs appearingin the rehabilitation literature. Action steps include specifyingthe kinds of articles and journals to include and searchingby professional organization memberships, institutions, disciplines,or countries. Professional organizations should be enlistedto collect this information on a regular and standardizedbasis, using existing methodology where possible.

Federal agency expenditures on rehabilitation research. Expendituresallocated to rehabilitation research in specific contentareas should be monitored. A recommended action step isto identify agency contact points to secure these data on anannual basis.

CONCLUSIONS

The longer-term challenge is to develop consensus on anacceptable definition of medical rehabilitation capacity andthen to operationalize each of its key components. Domainsthat are likely to be encompassed in that definition includefunding, qualified researchers, institutions, research training,research methods, an applicable knowledge base, an encompassingresearch agenda (including topics, their relative priority,and funding levels), knowledge translation activities,defined consumer demand and need, and political advocacy.Figure 1 is an attempt to organize those domains within acoherent framework. Each domain is assigned to 1 of 3 categories—the research agenda, research environment, or researchers—or to the conjunction of 2 of these groups. Stepsshould be taken to refine that scheme, along with the separatedomains within it. Additionally, feasible means must be identifiedto quantify each domain and to characterize its quality ofachievement (against some standard or norm). It will be necessarythen to establish the psychometric properties of the keyindicators (eg, their validity, reliability, and sensitivity).