A National Survey of Primary Care Practice-Based Research Networks

INTRODUCTION

In its landmark indictment of the quality of health care in the United States, the Institute of Medicine lamented that many proven effective treatments do not become incorporated into everyday care.¹ One review showed that only 14% of research findings filter down to everyday practice, and those that do take an average of 17 years.² In 2003 Elias Zerhouni, director of the National Institutes of Health (NIH), responded by increasing the NIH’s emphasis on translation of research into practice, establishing new research networks as a major step in NIH’s Roadmap for Re-Engineering the Clinical Research Enterprise.³

The disconnect between research and everyday practice is in large part because most research is performed in academic medical centers, where less than 1% of Americans visiting physicians receive their health care.⁴ Such research often excludes patients commonly seen in community-based primary care: elders, patients with multiple medical conditions, patients nonadherent to treatment, and those suffering from substance abuse or psychiatric disorders.⁵ Studies performed in academic centers also tend to examine patient and clinician behaviors under controlled situations. It is not surprising, then, that the results of such studies are often not applicable to many community-based primary care patients or their clinicians. Kroenke et al⁶ have shown that most patients seeking primary care have nonspecific complaints to which the results of published research may not be relevant. Thus, primary care physicians trying to practice evidence-based medicine are frequently hampered by having little evidence to apply to the problems they face. As a consequence, their patients often leave unsatisfied.⁷

There are therefore 2 major disconnects between research and practice: research may not translate expeditiously to everyday practice, and clinical problems encountered in everyday practice are often underinvestigated. PBRNs were established in the United Kingdom in the 1960s to overcome these disconnects and subsequently spread to other European countries.⁹ The first major PBRNs in the United States came in the 1970s: the Family Medicine Information System¹⁰ and the Cooperative Information Project.¹¹ These PBRNs were comprised mainly of community-based family medicine practices that had joined together to perform research relevant to the problems of delivering community-based primary care. In the United States, however, where federally funded research remained focused on academic medical centers, PBRNs have been slow to catch on.

In 2000, Congress responded by charging the Agency for Healthcare Research and Quality (AHRQ) to identify and support primary care practice-based research networks as a resource for accelerating the translation of research into practice and performing research relevant to everyday primary care.⁸ This act specifically states:

In order to address the full continuum of care and outcomes research, to link research to practice improvement, and to speed the dissemination of research findings to community practice settings, the Agency shall employ research strategies and mechanisms that will link research directly with clinical practice in geographically diverse locations throughout the United States, including … provider-based research networks, including plan, facility, or delivery system sites of care (especially primary care), that can evaluate outcomes and evaluate and promote quality improvement….

AHRQ pursued this congressional directive by providing specific funding opportunities for primary care PBRNs, first in 2000 and again in 2002. The first round offered 19 PBRNs 1-year grants to “assist new or established PBRNs in planning for activities to enhance their capacity to conduct research in primary care settings and translate research findings into practice.” AHRQ also collaborated with the Robert Wood Johnson Foundation to fund additional PBRNs to participate in a multisite research project focused on promoting healthy behaviors among patients in primary care settings.¹² More than 100 PBRNs applied for these funding opportunities, suggesting to AHRQ that there was an expanding number of PBRNs that might help fulfill their congressional mandate to translate research into everyday practice. To identify and describe existing US primary care PBRNs, AHRQ funded this systematic survey of all active primary care PBRNs in the United States. The goal was to describe their diversity in specialty, structure, function, and history, as well as their potential for translating research into practice and answering questions of importance to primary care practitioners and their patients.

METHODS

This study was approved by the institutional review boards of Indiana University and the National Opinion Research Center. In the fall of 2003, we identified currently active primary care PBRNs that had all the following criteria established by AHRQ in its PBRN initiative¹³:

• A director

• A formal administrative structure that transcended individual studies

• At least 15 separate primary care practices or clinicians

• More than 50% of the members practicing primary care in the United States

• Some mechanism for soliciting advice and feedback from the community of patients served by the network’s clinicians

To find primary care PBRNs, we looked for those currently or previously funded by AHRQ or the Robert Wood Johnson Foundation’s Prescription for Health Initiative,¹² those belonging to the Federation of Practice Based Research Networks (the Federation) affiliated with the American Academy of Family Physicians,¹⁴ those we found through published articles, and as many other PBRNs as we could find through discussions with AHRQ, leaders of the Federation, and existing PBRNs.

We developed a Web-based questionnaire that collected the following information from the PBRNs’ director and/or administrator: descriptions of the PBRN (name, office location, age, administrative structure); the member practices and clinicians (number and locations of practices, number of physicians or other primary care clinicians, and clinicians’ medical specialties); patients served (number per practice and demographic data including age, sex, race/ethnicity, insurance status, if known); types and sources of research funding; productivity (number of studies performed and number of subjects included); and research foci, including research themes (eg, specific population age or research methodology) and specific diseases and nondisease health conditions (based on a closed-ended list of common research foci). We also queried the PBRN directors or administrators on self-assessed strengths and weaknesses, whether their member practices had incorporated research results into their practices, and barriers to translating research into practice. Response categories were developed based on the research teams’ knowledge of practicing PBRNs. Thirty-five of the 45 questions were closed-ended to facilitate efficient completion of the questionnaire and data analysis. The survey questionnaire was pilot tested with 5 PBRNs and revised to reflect their input on interpretability, clarity, and feasibility of completion. The final instrument is available from the authors upon request.

We administered the questionnaire using UltimateApps (Prezza Technologies, Cambridge, Mass) by sending an e-mail to the director of each PBRN we identified, and we invited him or her to complete the questionnaire by clicking on a link to the survey Web site. Each director gave consent on the first page before proceeding to the questionnaire. We sent reminders to all PBRN directors who did not complete the questionnaire within 1 month. After 1 additional month, one of the authors called each nonresponding PBRN director and invited him or her to complete the questionnaire; if desired, they could complete it on paper and return it by mail or fax.

After a PBRN director or administrator completed the questionnaire, we invited the director to participate in a semistructured telephone interview using a standard protocol that included questions about current and anticipated research projects, decision-making procedures at the network, current challenges facing the network, and potential interest in participation in a national study. Qualitative data from the telephone conversations were used to supplement the survey data and, in some cases, complete missing items from the questionnaire.

We tabulated and analyzed all data using SAS version 8.02 (SAS Institute, Carey, NC). We assessed differences using corrected χ² tests and Fisher exact tests for categorical variables and Student t tests for continuous variables. Differences associated with P values >.05 were considered statistically significant. When cell sizes were small, we collapsed multilevel variables to create the most relevant dichotomous variables.

RESULTS

We found 111 primary care PBRNs that met our inclusion criteria; 89 (80%) completed the questionnaire. Three did not meet the criteria for a primary care PBRN and were excluded. The locations of the administrative offices of the final 86 PBRNs (77% of the 111 originally contacted) are shown in Figure 1⇓. (The 86 PBRNs providing data and their locations are listed in the online-only Supplemental Appendix, which can be found at: http://www.annfammed.org/cgi/content/full/5/3/242/DC1). At the time of this survey, these 86 PBRNs included 1,871 practices, 12,957 physicians (mean 152 ± 229, median 100, range 15–1,760), and 14.7 million patients (mean 229,880 ± 424,880, median 105,000, range 1,200 to 2.7 million). Eighty PBRNs (90% of respondents) provided addresses for all of their practices, and the 46 AHRQ-funded PBRNs provided detailed information on their practices, clinicians, and patients and completed semistructured telephone interviews. As shown in Figure 1⇓, the 68 PBRNs providing practice addresses had member practices in all 50 states and Puerto Rico, although the heaviest concentrations were in the eastern states and the Midwest. Three PBRNs were nationwide, with member practices in multiple states and affiliated with professional organizations: the American College of Physicians, the American Academy of Family Physicians, and the American Pediatrics Association. The rest had practices in a single state or adjoining states.

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Figure 1.

Location of primary care practice-based research network administrative offices.

PBRN = practice-based research network.

Note: Practice locations are limited to cities, so multiple PBRN offices or practices in a single city are indicated by a single dot.

DISCUSSION

A substantial number of primary care PBRNs were extant in 2003. Their wide geographic distribution and involvement of all primary care specialties make them a strong potential resource for performing research that is relevant to practicing primary care clinicians. Many are young, however, most are affiliated with universities, and poor and minority patients are overrepresented in their practices. Thus, this potential resource will need cultivation before it matures as a potent tool to meet the NIH Roadmap goals³ and the AHRQ congressional mandate of addressing the full continuum of care, linking research to practice improvement, and speeding the dissemination of research findings to community practice settings.

Existing PBRNs use a mixture of their own clinicians (bottom-up) and outside investigators (top-down) to choose research foci and individual projects. As a result, using PBRNs as a research resource will require efforts to establish more-effective communication among funding agencies, investigators, PBRN administrators, and PBRN clinicians. Furthermore, this communication should be bidirectional: (1) the PBRNs and their clinicians should be cognizant of the research interests and needs of federal and other funding agencies, and embrace those that are consistent with the needs and capabilities of the PBRNs and their practices; and (2) the funding agencies should use the PBRNs and their practices to better understand (and direct funds toward answering) the questions that everyday clinicians need answered so they can deliver high-quality, cost-effective care.

Although most PBRNs are affiliated with universities, the 2 largest we surveyed are affiliated with professional organizations. Specifically, the American Academy of Family Physicians has established the AAFP National Research Network (formerly the National Network for Family Practice and Primary Care Research¹⁸), which includes 206 practices and 200,000 patients; and Pediatric Research in Office Settings¹⁹ is affiliated with the American Academy of Pediatrics and contains 1,760 practices and 2.7 million patients. The American College of Physicians also supports the American College of Physicians Network,²⁰ which at the time of this survey was 1 year old and growing, with 400 practices and 34,000 patients; as of this writing, it has 730 practices representing all 50 states. Affiliation with a national organization can facilitate a PBRN’s involving a great many disparate practices with a wide geographic distribution that would improve external validity and generalizability of research results. In return, the PBRN provides the organization with a specialty-focused research venue that can serve the organization’s specific research goals and objectives.

Funding PBRN activities, infrastructure, operations, and research projects is the principal barrier to realizing a PBRNs’ potential as a research resource. Affiliation with universities and professional organizations provides some security to PBRNs, but this support could come with demands on access to the practices and research directions. Thus, financial dependency could deflect the PBRNs from their research mission and be responsible for the preponderance of top-down or mixed models of decision making about research directions and individual projects. Through a peer learning group facilitated by the AHRQ National Resource Center for Practice-Based Research Networks,²¹ the PBRNs are sharing experiences and evolving to more stable financial configurations.

This study has limitations. There was no central resource for identifying primary care PBRNs, and the definitions of what constitutes primary care and what is a PBRN, although formally established by AHRQ, are somewhat arbitrary. Our focus on primary care excluded the expanding number of disease-specific PBRNs, eg, those studying cancer²² and asthma,²³ and those by disciplines other than medicine, eg, dentistry.²⁴ Moreover, 20% of those primary care PBRNs we did identify declined to participate in this survey, which could bias our results. Also, many of the PBRNs we surveyed were young and could have matured or failed since the survey. Finally, our results may not be typical for primary care PBRNs in other countries, where PBRNs are older and more mature, and the relationships between generalists and specialists may differ substantially from those in the United States.

Nonetheless, PBRNs are gaining momentum and recognition both nationally and internationally.²⁵ There is increasing interest in using PBRNs as a test-bed to address clinical and public health issues that are of great national interest. For example, one primary care PBRN and a consortium of primary care PBRNs were among the 12 research networks funded by the NIH Roadmap program, Re-Engineering the Clinical Research Enterprise, to initiate a national electronic research infrastructure.²⁶ The Robert Wood Johnson Foundation funded 19 primary care PBRNs to study methods to help enhance patients’ healthy behaviors.¹² PBRNs have attracted the attention of several NIH institutes (including the National Institute of Mental Health, National Institute of Diabetes and Digestive and Kidney Diseases, National Heart, Lung, and Blood Institute, and National Cancer Institute) whose leaders see the potential of PBRNs as bidirectional venues for translating research into practice and practice into research. The funders of PBRN research and the PBRN community should collaborate on establishing a cogent research agenda, and the funding agencies should target funding programs toward PBRNs. The PBRNs should also collaborate among themselves to enhance their value as a network of PBRNs by sharing experiences (grasping opportunities and overcoming barriers) and collaborating on individual studies. Creative local and national investment in PBRNs will be necessary to continue their evolution into effective and productive primary care research laboratories and fulfill the NIH and AHRQ vision of “putting research into practice and practice into research.”²⁷