Family Practice Research Networks: Experiences from 3 Countries

In many countries the structure of health care is under review, and strengthening the delivery of primary health care is a common concern.^1,2 Primary care implies medical care in the context of the individual’s psychosocial and family structure—the “contextual complexity” of medical care³—and this primary care orientation⁴ improves cost-effectiveness.⁵ The medical discipline most directly involved in developing primary care is family practice; in Europe and the United Kingdom it is also referred to as general practice. We will use the term family practice, since these terms are used interchangeably in the international literature.³

For the continued development of the discipline of family practice, it is essential to evaluate the needs of patients and the effectiveness of primary care, and to develop evidence to guide practice. To achieve this, routine patient care in the community has to be subjected to systematic research. Practice-based research networks (PBRNs) provide the primary care disciplines with the research laboratories needed to promote scientifically rigorous collection of data. These laboratories reflect the social setting of practice and the personal relations between physicians and patients over time. They provide the opportunities to study unselected health problems, the effect of continuity of care, individual disease prevention strategies, care of families, and the implications of providing care with respect to individual and sociocultural norms and values.^6,7

This personal dimension of family practice can cause tension with the need for research to be representative of and applicable to family practice in general. This is a limitation of single-practice research. Thus, researchers usually aim for a representative mix of family practices in primary care research. Involving more practices also opens the possibility of recruiting larger numbers of patients and physicians. The networking of practices for research is a way of investing in the research culture of family medicine and creating favorable conditions to collect data, test interventions, and study the outcomes of care. PBRNs have become an important element in family practice and have been increasing in number and scope.^8-10 Their development can benefit from a better understanding of their strengths and weaknesses. In particular, the sharing of different experiences can help identify some key aspects of network operations.

Methods

The 1998 Wisconsin Research Network Conference provided an opportunity for the authors to study PBRN experiences. Network experiences from the United Kingdom and the Netherlands were presented, and this resulted in a comparison of 3 networks in 3 countries: the Wisconsin Research Network (United States), the Wessex Primary Care Research Network (England),¹¹ and the Nijmegen Family Practice Academic Network (the Netherlands).^12-14 Although this is an arbitrary selection of networks, each has a record of family practice research and operates in its prevailing health care setting and within its national culture of clinical research. This suggested that the comparisons would yield insights that are relevant for family practice research networks in general.

In the presentations and discussions various aspects of PBRN structure and operation were addressed. We condensed these into 4 key areas: (1) the missions of the networks; (2) the contribution of the networks to the evidence base of family medicine;^11-31 (3) the management of the networks, relationship to members, and data collection; and (4) the financing of the network infrastructure and studies.

Results

Information about the 3 networks is summarized in the Tables: In Table 1 the key characteristics are outlined, and in Table 2 the results of 5 characteristic studies are listed, including funding source and main publications. The Wisconsin network lists more than 700 members, including 467 family physicians in 207 practices (approximately one third of the family physicians in the state), who cover a population of more than 900,000. The network also includes specialists, nurses, and researchers. The Wessex network covers a patient population of more than 1.7 million people and involves 234 family physicians in 125 practices, as well as practice nurses, dentists, pharmacists, and optometrists. The Nijmegen network is based on a stable group of 10 practices with 25 family physicians. It covers a population of 45,000 that reflects the composition of the Dutch population in age and social class. Each network has a direct link to academic family medicine.

Missions of the Networks

The goal of all 3 networks is to increase the evidence base of primary care. However, there are important differences in the way this mission is put into operation. The Nijmegen network collects patient-related data on an ongoing basis. Since 1971 it has collected all presented morbidity, and since 1986 it has accumulated a core set of process and outcome data from patients with hypertension and heart disease, diabetes mellitus, asthma, and chronic obstructive pulmonary disease. Thus, a database of long-term individual morbidity and outcome of care has been built that forms the index for further clinical research. Data collection and associated research are centrally structured, and all practices and physicians are fully committed to the data collection.

In contrast, Wisconsin and Wessex formed networks for family physicians and other primary care professionals with an interest in research. The networks provide support for research initiatives by offering opportunities to join studies (including research training) and by supporting their own research initiatives. Involvement is optional and reflects the interests and ambitions of the individual practices. Approximately half of the clinicians (350) in the Wisconsin network have been actively involved in 1 or more studies. To date, 70% of the practices in the Wessex network have been involved in 1 or more projects.

Contributions to the Evidence Base

These networks indicated characteristic studies done by (or in the case of Wisconsin, supported by) their network (Table 2). Two main areas of research are represented in these studies: (1) the quality of the care during the projects on the identification of disease risk (Wisconsin), asthma information,²³ and venepuncture²⁵ (Wessex); and (2) prevention and treatment of common morbidity. This covers a wide range of illnesses and addresses an interesting mixture of objectives. The asthma studies in Wisconsin²¹ and Nijmegen²⁹ and the Wisconsin alcoholism study²⁰ focus on the pathophysiological aspects of the disease and potential intervention effects (efficacy), while the Wessex osteoporosis study and the Nijmegen preventive cardiology study³⁰ assessed the effectiveness of interventions under primary care conditions. Documenting the natural course of the disease and preventive actions are featured in studies on screening^15-19 (Wisconsin), hay fever²² (Wessex), childhood morbidity,²⁸ diabetes mellitus,²⁶ and depression³¹ (Nijmegen). The role of the networks in the conduct of these studies ranges from total responsibility (Wessex, Nijmegen) to a more varied role ranging from total responsibility to recruiting practices only (Wisconsin). Summarizing the research output is difficult given the range of clinical primary care topics covered. The summaries in Table 2 suggest that the research is aimed at addressing essential clinical decisions family physicians are facing in their routine daily care.

Management of the Networks and Relationship to Members

The Wessex and Nijmegen networks are university based. The Wisconsin network was initiated by the Wisconsin Academy of Family Physicians (WAFP) and is managed by and receives support from the University of Wisconsin. All 3 coordinating academic centers promote ownership of network activities by the participating practices. This includes regular exchange of information on new and ongoing research and study-specific instructions. The consent of the participating practices is mandatory before a study can be performed, irrespective of the source of funding or the director of the study. In Wisconsin, the WAFP must approve major commitments of the members’ time and energy. Each network involves participating physicians as principal or co-principal investigators when possible. There are differences in the way regular contacts are maintained, depending on the size of the network and the geography. The small Nijmegen network holds monthly meetings; the larger Wisconsin and Wessex networks organize an annual conference and apply distance communication technology: newsletters, Web sites, E-mail, and an electronic discussion list. They 2 larger networks maintain closer contact with a core group of active researchers through project team meetings.

Data Collection

Data collection methods are varied. The Nijmegen network collects a standard set of patient-related data for every practice on a routine basis. The other networks collect only project-specific data derived from medical records, laboratory tests, physician surveys, and patient interviews. In addition, Wisconsin uses multiple methods ranging from qualitative methods to chart review to review clinical databases. Currently there are projects piloting the application of new technology including interactive voice recording and Internet-based data acquisition.

The Financing of the Networks

The funding of the networks has to cover 2 areas: the network infrastructure and specific research projects. The latter involves the main national funding bodies for biomedical research including scientific foundations and industry (Table 2). The infrastructure costs include co-ordination, methodologic support, and administrative support. Recently limited structural support has been provided by the university (Nijmegen) and the National Health Service Research and Development Program (Wessex). In Wisconsin basic financial support comes from the WAFP, with the university providing senior staff time and office space. This funding, however, is insufficient to provide comprehensive support for the multidisciplinary research that characterises PBRNs. In Nijmegen a contract between the university and the practices determines financial and scientific duties, given their intensive cooperation.

Also, obtaining grant support for projects has proved difficult for all networks. Review committees are often mainly accustomed to reductionistic research about unitary and well-defined problems and have been concerned about pragmatic designs.

Discussion

We used information from 3 networks in 3 countries to describe PBRNs in the context of primary care developments in their country of origin. This enhanced the richness of our data but is also the major limitation of our study because it did not necessarily represent a complete view of a majority of the existing experience. However, our comparison illustrates the common elements of each of the 3 PBRNs: They have each successfully recruited large numbers of unselected patients from different practices for epidemiologic and clinical research, efficacy (and, to a reasonable extent, effectiveness) studies, and studies aimed at improving our understanding of the process of care in family practice.

The recruitment of members into networks and specific research studies depends on their interest and willingness to contribute to research. Each network allows clinicians to make their own decision about whether to be involved in studies. Networks consist of self-selected practices, and in the United States and the United Kingdom not all practices agree to participate in all studies. This has implications for selection bias, particularly in studies where the clinician or the practice is the subject of study. However, given the fact that care is provided for unselected patients, practice self-selection will have less impact on patient-directed research. The Nijmegen experience illustrates that there may be a time in the development of the network when membership becomes more demanding, and members may be even less representative of clinicians in general. However, none of the network directors mentioned the retention of practices and physicians as a problem. Apparently this is related to the flexible approach in recruitment.

The Wisconsin and Wessex networks hope to stimulate physicians’ personal involvement in research to create a questioning environment. This is an additional bottom-up development in creating a research culture. In this respect the Nijmegen network seems at first to be very different, functioning more as a top-down university-centered research program. This is not true, however, as the Nijmegen network has provided family practice input to the medical school for more than 20 years, and 8 of the 25 physicians to date have received the highest academic degree of MD, PhD. The Nijmegen situation represents the full circle of changed research culture, with networked family physicians in charge of an independent family practice research program.

Ownership of the research is a particularly sensitive issue that can make or break the success of a study. Only when family physicians are confident that the data collection is relevant to and compatible with the demands of routine practice will it be possible to pursue a study.³² A key function of PBRN management is close communication and negotiation between researchers and physicians. An important outcome of this communication is the role of the network in providing direct input from primary care clinicians about the relevance of proposed studies for the development of family medicine. There is a need for direct research into the interests of clinicians who have to cope with the full complexity of patient care in the community setting.

A second key function of PBRN management is to develop research methodology in the network: Better research methodology will facilitate physician involvement, assist funding, and assure the obtained data are valid. Networks develop their own momentum. Initially, simple descriptive studies are conducted, but with increasing experience PBRNs can address larger and more complex collaborative projects. This process in the Nijmegen network has already been analyzed.³³

PBRN studies may support current care practices and have a quality assurance focus in improving interventions, or cast doubt on current care practices and contribute to the development of new ones. A variety of primary care settings need to be used for these studies, given the impact of environment on the outcome of care. Evidence from small specialty settings can only be introduced directly into routine family practice to a limited degree.

The relationship between practice and research

The 3 networks expressed the need to support routine practice, do research, and, at the same time, raise the quality of care in the network. An integral relationship between practice and research is apparent in each of the networks. Questioning and supporting primary care simultaneously, however, is more ambivalent than it may seem at first sight. For family medicine it is particularly important to demonstrate that interventions work under most prevailing primary care conditions (evidence-based practice).³⁴ But because a substantial number of interventions are used mainly in primary care settings, the potential of these interventions (efficacy) must also be studied in primary care. The studies of the pathophysiology of asthma fall into this category; these require ideal rather than prevailing practice conditions. This requires a choice from networks about how to perform these types of studies. The Nijmegen network represents an academic primary care setting tuned to the requirements of efficacy research. The Wisconsin and Wessex networks reflect more the existing variations in actual care, and this provides excellent opportunities for studying effectiveness of care under primary care conditions. A number of studies in the networks were descriptive, detailing the natural course of illness and disease under primary care conditions. These are important as they demonstrate to what extent evidence from other studies can be directly translated to practice.

The recent financial support for networks in the Netherlands⁸ and the United Kingdom⁹ heralds the increasing awareness of the importance of primary care evidence. Within the last year in the US Agency for Healthcare Research and Quality (AHRQ) has for the first time offered direct support for building PBRN infrastructure. But because the structure of research networks depend on the research agenda, there is a need for more appropriate financing of their infrastructures. The increasing awareness of the importance of practice-based research is further highlighted by the formation of the Federation of Practice-Based Research Networks (FPBRN), which is working to help networks communicate and collaborate on projects across national and international boundaries.

Conclusions

Family practice research networks are an important way of facilitating research in primary care and of assuring sufficient primary care emphasis in clinical studies. The scientific products of these networks, as judged from their publications, make valuable contributions to the evidence base of primary care.

In many countries the structure of health care is under review, and strengthening the delivery of primary health care is a common concern.^1,2 Primary care implies medical care in the context of the individual’s psychosocial and family structure—the “contextual complexity” of medical care³—and this primary care orientation⁴ improves cost-effectiveness.⁵ The medical discipline most directly involved in developing primary care is family practice; in Europe and the United Kingdom it is also referred to as general practice. We will use the term family practice, since these terms are used interchangeably in the international literature.³

For the continued development of the discipline of family practice, it is essential to evaluate the needs of patients and the effectiveness of primary care, and to develop evidence to guide practice. To achieve this, routine patient care in the community has to be subjected to systematic research. Practice-based research networks (PBRNs) provide the primary care disciplines with the research laboratories needed to promote scientifically rigorous collection of data. These laboratories reflect the social setting of practice and the personal relations between physicians and patients over time. They provide the opportunities to study unselected health problems, the effect of continuity of care, individual disease prevention strategies, care of families, and the implications of providing care with respect to individual and sociocultural norms and values.^6,7

This personal dimension of family practice can cause tension with the need for research to be representative of and applicable to family practice in general. This is a limitation of single-practice research. Thus, researchers usually aim for a representative mix of family practices in primary care research. Involving more practices also opens the possibility of recruiting larger numbers of patients and physicians. The networking of practices for research is a way of investing in the research culture of family medicine and creating favorable conditions to collect data, test interventions, and study the outcomes of care. PBRNs have become an important element in family practice and have been increasing in number and scope.^8-10 Their development can benefit from a better understanding of their strengths and weaknesses. In particular, the sharing of different experiences can help identify some key aspects of network operations.

Methods

The 1998 Wisconsin Research Network Conference provided an opportunity for the authors to study PBRN experiences. Network experiences from the United Kingdom and the Netherlands were presented, and this resulted in a comparison of 3 networks in 3 countries: the Wisconsin Research Network (United States), the Wessex Primary Care Research Network (England),¹¹ and the Nijmegen Family Practice Academic Network (the Netherlands).^12-14 Although this is an arbitrary selection of networks, each has a record of family practice research and operates in its prevailing health care setting and within its national culture of clinical research. This suggested that the comparisons would yield insights that are relevant for family practice research networks in general.

In the presentations and discussions various aspects of PBRN structure and operation were addressed. We condensed these into 4 key areas: (1) the missions of the networks; (2) the contribution of the networks to the evidence base of family medicine;^11-31 (3) the management of the networks, relationship to members, and data collection; and (4) the financing of the network infrastructure and studies.

Results

Information about the 3 networks is summarized in the Tables: In Table 1 the key characteristics are outlined, and in Table 2 the results of 5 characteristic studies are listed, including funding source and main publications. The Wisconsin network lists more than 700 members, including 467 family physicians in 207 practices (approximately one third of the family physicians in the state), who cover a population of more than 900,000. The network also includes specialists, nurses, and researchers. The Wessex network covers a patient population of more than 1.7 million people and involves 234 family physicians in 125 practices, as well as practice nurses, dentists, pharmacists, and optometrists. The Nijmegen network is based on a stable group of 10 practices with 25 family physicians. It covers a population of 45,000 that reflects the composition of the Dutch population in age and social class. Each network has a direct link to academic family medicine.

Missions of the Networks

The goal of all 3 networks is to increase the evidence base of primary care. However, there are important differences in the way this mission is put into operation. The Nijmegen network collects patient-related data on an ongoing basis. Since 1971 it has collected all presented morbidity, and since 1986 it has accumulated a core set of process and outcome data from patients with hypertension and heart disease, diabetes mellitus, asthma, and chronic obstructive pulmonary disease. Thus, a database of long-term individual morbidity and outcome of care has been built that forms the index for further clinical research. Data collection and associated research are centrally structured, and all practices and physicians are fully committed to the data collection.

In contrast, Wisconsin and Wessex formed networks for family physicians and other primary care professionals with an interest in research. The networks provide support for research initiatives by offering opportunities to join studies (including research training) and by supporting their own research initiatives. Involvement is optional and reflects the interests and ambitions of the individual practices. Approximately half of the clinicians (350) in the Wisconsin network have been actively involved in 1 or more studies. To date, 70% of the practices in the Wessex network have been involved in 1 or more projects.

Contributions to the Evidence Base

These networks indicated characteristic studies done by (or in the case of Wisconsin, supported by) their network (Table 2). Two main areas of research are represented in these studies: (1) the quality of the care during the projects on the identification of disease risk (Wisconsin), asthma information,²³ and venepuncture²⁵ (Wessex); and (2) prevention and treatment of common morbidity. This covers a wide range of illnesses and addresses an interesting mixture of objectives. The asthma studies in Wisconsin²¹ and Nijmegen²⁹ and the Wisconsin alcoholism study²⁰ focus on the pathophysiological aspects of the disease and potential intervention effects (efficacy), while the Wessex osteoporosis study and the Nijmegen preventive cardiology study³⁰ assessed the effectiveness of interventions under primary care conditions. Documenting the natural course of the disease and preventive actions are featured in studies on screening^15-19 (Wisconsin), hay fever²² (Wessex), childhood morbidity,²⁸ diabetes mellitus,²⁶ and depression³¹ (Nijmegen). The role of the networks in the conduct of these studies ranges from total responsibility (Wessex, Nijmegen) to a more varied role ranging from total responsibility to recruiting practices only (Wisconsin). Summarizing the research output is difficult given the range of clinical primary care topics covered. The summaries in Table 2 suggest that the research is aimed at addressing essential clinical decisions family physicians are facing in their routine daily care.

Management of the Networks and Relationship to Members

The Wessex and Nijmegen networks are university based. The Wisconsin network was initiated by the Wisconsin Academy of Family Physicians (WAFP) and is managed by and receives support from the University of Wisconsin. All 3 coordinating academic centers promote ownership of network activities by the participating practices. This includes regular exchange of information on new and ongoing research and study-specific instructions. The consent of the participating practices is mandatory before a study can be performed, irrespective of the source of funding or the director of the study. In Wisconsin, the WAFP must approve major commitments of the members’ time and energy. Each network involves participating physicians as principal or co-principal investigators when possible. There are differences in the way regular contacts are maintained, depending on the size of the network and the geography. The small Nijmegen network holds monthly meetings; the larger Wisconsin and Wessex networks organize an annual conference and apply distance communication technology: newsletters, Web sites, E-mail, and an electronic discussion list. They 2 larger networks maintain closer contact with a core group of active researchers through project team meetings.

Data Collection

Data collection methods are varied. The Nijmegen network collects a standard set of patient-related data for every practice on a routine basis. The other networks collect only project-specific data derived from medical records, laboratory tests, physician surveys, and patient interviews. In addition, Wisconsin uses multiple methods ranging from qualitative methods to chart review to review clinical databases. Currently there are projects piloting the application of new technology including interactive voice recording and Internet-based data acquisition.

The Financing of the Networks

The funding of the networks has to cover 2 areas: the network infrastructure and specific research projects. The latter involves the main national funding bodies for biomedical research including scientific foundations and industry (Table 2). The infrastructure costs include co-ordination, methodologic support, and administrative support. Recently limited structural support has been provided by the university (Nijmegen) and the National Health Service Research and Development Program (Wessex). In Wisconsin basic financial support comes from the WAFP, with the university providing senior staff time and office space. This funding, however, is insufficient to provide comprehensive support for the multidisciplinary research that characterises PBRNs. In Nijmegen a contract between the university and the practices determines financial and scientific duties, given their intensive cooperation.

Also, obtaining grant support for projects has proved difficult for all networks. Review committees are often mainly accustomed to reductionistic research about unitary and well-defined problems and have been concerned about pragmatic designs.

Discussion

We used information from 3 networks in 3 countries to describe PBRNs in the context of primary care developments in their country of origin. This enhanced the richness of our data but is also the major limitation of our study because it did not necessarily represent a complete view of a majority of the existing experience. However, our comparison illustrates the common elements of each of the 3 PBRNs: They have each successfully recruited large numbers of unselected patients from different practices for epidemiologic and clinical research, efficacy (and, to a reasonable extent, effectiveness) studies, and studies aimed at improving our understanding of the process of care in family practice.

The recruitment of members into networks and specific research studies depends on their interest and willingness to contribute to research. Each network allows clinicians to make their own decision about whether to be involved in studies. Networks consist of self-selected practices, and in the United States and the United Kingdom not all practices agree to participate in all studies. This has implications for selection bias, particularly in studies where the clinician or the practice is the subject of study. However, given the fact that care is provided for unselected patients, practice self-selection will have less impact on patient-directed research. The Nijmegen experience illustrates that there may be a time in the development of the network when membership becomes more demanding, and members may be even less representative of clinicians in general. However, none of the network directors mentioned the retention of practices and physicians as a problem. Apparently this is related to the flexible approach in recruitment.

The Wisconsin and Wessex networks hope to stimulate physicians’ personal involvement in research to create a questioning environment. This is an additional bottom-up development in creating a research culture. In this respect the Nijmegen network seems at first to be very different, functioning more as a top-down university-centered research program. This is not true, however, as the Nijmegen network has provided family practice input to the medical school for more than 20 years, and 8 of the 25 physicians to date have received the highest academic degree of MD, PhD. The Nijmegen situation represents the full circle of changed research culture, with networked family physicians in charge of an independent family practice research program.

Ownership of the research is a particularly sensitive issue that can make or break the success of a study. Only when family physicians are confident that the data collection is relevant to and compatible with the demands of routine practice will it be possible to pursue a study.³² A key function of PBRN management is close communication and negotiation between researchers and physicians. An important outcome of this communication is the role of the network in providing direct input from primary care clinicians about the relevance of proposed studies for the development of family medicine. There is a need for direct research into the interests of clinicians who have to cope with the full complexity of patient care in the community setting.

A second key function of PBRN management is to develop research methodology in the network: Better research methodology will facilitate physician involvement, assist funding, and assure the obtained data are valid. Networks develop their own momentum. Initially, simple descriptive studies are conducted, but with increasing experience PBRNs can address larger and more complex collaborative projects. This process in the Nijmegen network has already been analyzed.³³

PBRN studies may support current care practices and have a quality assurance focus in improving interventions, or cast doubt on current care practices and contribute to the development of new ones. A variety of primary care settings need to be used for these studies, given the impact of environment on the outcome of care. Evidence from small specialty settings can only be introduced directly into routine family practice to a limited degree.

The relationship between practice and research

The 3 networks expressed the need to support routine practice, do research, and, at the same time, raise the quality of care in the network. An integral relationship between practice and research is apparent in each of the networks. Questioning and supporting primary care simultaneously, however, is more ambivalent than it may seem at first sight. For family medicine it is particularly important to demonstrate that interventions work under most prevailing primary care conditions (evidence-based practice).³⁴ But because a substantial number of interventions are used mainly in primary care settings, the potential of these interventions (efficacy) must also be studied in primary care. The studies of the pathophysiology of asthma fall into this category; these require ideal rather than prevailing practice conditions. This requires a choice from networks about how to perform these types of studies. The Nijmegen network represents an academic primary care setting tuned to the requirements of efficacy research. The Wisconsin and Wessex networks reflect more the existing variations in actual care, and this provides excellent opportunities for studying effectiveness of care under primary care conditions. A number of studies in the networks were descriptive, detailing the natural course of illness and disease under primary care conditions. These are important as they demonstrate to what extent evidence from other studies can be directly translated to practice.

The recent financial support for networks in the Netherlands⁸ and the United Kingdom⁹ heralds the increasing awareness of the importance of primary care evidence. Within the last year in the US Agency for Healthcare Research and Quality (AHRQ) has for the first time offered direct support for building PBRN infrastructure. But because the structure of research networks depend on the research agenda, there is a need for more appropriate financing of their infrastructures. The increasing awareness of the importance of practice-based research is further highlighted by the formation of the Federation of Practice-Based Research Networks (FPBRN), which is working to help networks communicate and collaborate on projects across national and international boundaries.

Conclusions

Family practice research networks are an important way of facilitating research in primary care and of assuring sufficient primary care emphasis in clinical studies. The scientific products of these networks, as judged from their publications, make valuable contributions to the evidence base of primary care.

In many countries the structure of health care is under review, and strengthening the delivery of primary health care is a common concern.^1,2 Primary care implies medical care in the context of the individual’s psychosocial and family structure—the “contextual complexity” of medical care³—and this primary care orientation⁴ improves cost-effectiveness.⁵ The medical discipline most directly involved in developing primary care is family practice; in Europe and the United Kingdom it is also referred to as general practice. We will use the term family practice, since these terms are used interchangeably in the international literature.³

For the continued development of the discipline of family practice, it is essential to evaluate the needs of patients and the effectiveness of primary care, and to develop evidence to guide practice. To achieve this, routine patient care in the community has to be subjected to systematic research. Practice-based research networks (PBRNs) provide the primary care disciplines with the research laboratories needed to promote scientifically rigorous collection of data. These laboratories reflect the social setting of practice and the personal relations between physicians and patients over time. They provide the opportunities to study unselected health problems, the effect of continuity of care, individual disease prevention strategies, care of families, and the implications of providing care with respect to individual and sociocultural norms and values.^6,7

This personal dimension of family practice can cause tension with the need for research to be representative of and applicable to family practice in general. This is a limitation of single-practice research. Thus, researchers usually aim for a representative mix of family practices in primary care research. Involving more practices also opens the possibility of recruiting larger numbers of patients and physicians. The networking of practices for research is a way of investing in the research culture of family medicine and creating favorable conditions to collect data, test interventions, and study the outcomes of care. PBRNs have become an important element in family practice and have been increasing in number and scope.^8-10 Their development can benefit from a better understanding of their strengths and weaknesses. In particular, the sharing of different experiences can help identify some key aspects of network operations.

Methods

The 1998 Wisconsin Research Network Conference provided an opportunity for the authors to study PBRN experiences. Network experiences from the United Kingdom and the Netherlands were presented, and this resulted in a comparison of 3 networks in 3 countries: the Wisconsin Research Network (United States), the Wessex Primary Care Research Network (England),¹¹ and the Nijmegen Family Practice Academic Network (the Netherlands).^12-14 Although this is an arbitrary selection of networks, each has a record of family practice research and operates in its prevailing health care setting and within its national culture of clinical research. This suggested that the comparisons would yield insights that are relevant for family practice research networks in general.

In the presentations and discussions various aspects of PBRN structure and operation were addressed. We condensed these into 4 key areas: (1) the missions of the networks; (2) the contribution of the networks to the evidence base of family medicine;^11-31 (3) the management of the networks, relationship to members, and data collection; and (4) the financing of the network infrastructure and studies.

Results

Information about the 3 networks is summarized in the Tables: In Table 1 the key characteristics are outlined, and in Table 2 the results of 5 characteristic studies are listed, including funding source and main publications. The Wisconsin network lists more than 700 members, including 467 family physicians in 207 practices (approximately one third of the family physicians in the state), who cover a population of more than 900,000. The network also includes specialists, nurses, and researchers. The Wessex network covers a patient population of more than 1.7 million people and involves 234 family physicians in 125 practices, as well as practice nurses, dentists, pharmacists, and optometrists. The Nijmegen network is based on a stable group of 10 practices with 25 family physicians. It covers a population of 45,000 that reflects the composition of the Dutch population in age and social class. Each network has a direct link to academic family medicine.

Missions of the Networks

The goal of all 3 networks is to increase the evidence base of primary care. However, there are important differences in the way this mission is put into operation. The Nijmegen network collects patient-related data on an ongoing basis. Since 1971 it has collected all presented morbidity, and since 1986 it has accumulated a core set of process and outcome data from patients with hypertension and heart disease, diabetes mellitus, asthma, and chronic obstructive pulmonary disease. Thus, a database of long-term individual morbidity and outcome of care has been built that forms the index for further clinical research. Data collection and associated research are centrally structured, and all practices and physicians are fully committed to the data collection.

In contrast, Wisconsin and Wessex formed networks for family physicians and other primary care professionals with an interest in research. The networks provide support for research initiatives by offering opportunities to join studies (including research training) and by supporting their own research initiatives. Involvement is optional and reflects the interests and ambitions of the individual practices. Approximately half of the clinicians (350) in the Wisconsin network have been actively involved in 1 or more studies. To date, 70% of the practices in the Wessex network have been involved in 1 or more projects.

Contributions to the Evidence Base

These networks indicated characteristic studies done by (or in the case of Wisconsin, supported by) their network (Table 2). Two main areas of research are represented in these studies: (1) the quality of the care during the projects on the identification of disease risk (Wisconsin), asthma information,²³ and venepuncture²⁵ (Wessex); and (2) prevention and treatment of common morbidity. This covers a wide range of illnesses and addresses an interesting mixture of objectives. The asthma studies in Wisconsin²¹ and Nijmegen²⁹ and the Wisconsin alcoholism study²⁰ focus on the pathophysiological aspects of the disease and potential intervention effects (efficacy), while the Wessex osteoporosis study and the Nijmegen preventive cardiology study³⁰ assessed the effectiveness of interventions under primary care conditions. Documenting the natural course of the disease and preventive actions are featured in studies on screening^15-19 (Wisconsin), hay fever²² (Wessex), childhood morbidity,²⁸ diabetes mellitus,²⁶ and depression³¹ (Nijmegen). The role of the networks in the conduct of these studies ranges from total responsibility (Wessex, Nijmegen) to a more varied role ranging from total responsibility to recruiting practices only (Wisconsin). Summarizing the research output is difficult given the range of clinical primary care topics covered. The summaries in Table 2 suggest that the research is aimed at addressing essential clinical decisions family physicians are facing in their routine daily care.

Management of the Networks and Relationship to Members

The Wessex and Nijmegen networks are university based. The Wisconsin network was initiated by the Wisconsin Academy of Family Physicians (WAFP) and is managed by and receives support from the University of Wisconsin. All 3 coordinating academic centers promote ownership of network activities by the participating practices. This includes regular exchange of information on new and ongoing research and study-specific instructions. The consent of the participating practices is mandatory before a study can be performed, irrespective of the source of funding or the director of the study. In Wisconsin, the WAFP must approve major commitments of the members’ time and energy. Each network involves participating physicians as principal or co-principal investigators when possible. There are differences in the way regular contacts are maintained, depending on the size of the network and the geography. The small Nijmegen network holds monthly meetings; the larger Wisconsin and Wessex networks organize an annual conference and apply distance communication technology: newsletters, Web sites, E-mail, and an electronic discussion list. They 2 larger networks maintain closer contact with a core group of active researchers through project team meetings.

Data Collection

Data collection methods are varied. The Nijmegen network collects a standard set of patient-related data for every practice on a routine basis. The other networks collect only project-specific data derived from medical records, laboratory tests, physician surveys, and patient interviews. In addition, Wisconsin uses multiple methods ranging from qualitative methods to chart review to review clinical databases. Currently there are projects piloting the application of new technology including interactive voice recording and Internet-based data acquisition.

The Financing of the Networks

The funding of the networks has to cover 2 areas: the network infrastructure and specific research projects. The latter involves the main national funding bodies for biomedical research including scientific foundations and industry (Table 2). The infrastructure costs include co-ordination, methodologic support, and administrative support. Recently limited structural support has been provided by the university (Nijmegen) and the National Health Service Research and Development Program (Wessex). In Wisconsin basic financial support comes from the WAFP, with the university providing senior staff time and office space. This funding, however, is insufficient to provide comprehensive support for the multidisciplinary research that characterises PBRNs. In Nijmegen a contract between the university and the practices determines financial and scientific duties, given their intensive cooperation.

Also, obtaining grant support for projects has proved difficult for all networks. Review committees are often mainly accustomed to reductionistic research about unitary and well-defined problems and have been concerned about pragmatic designs.

Discussion

We used information from 3 networks in 3 countries to describe PBRNs in the context of primary care developments in their country of origin. This enhanced the richness of our data but is also the major limitation of our study because it did not necessarily represent a complete view of a majority of the existing experience. However, our comparison illustrates the common elements of each of the 3 PBRNs: They have each successfully recruited large numbers of unselected patients from different practices for epidemiologic and clinical research, efficacy (and, to a reasonable extent, effectiveness) studies, and studies aimed at improving our understanding of the process of care in family practice.

The recruitment of members into networks and specific research studies depends on their interest and willingness to contribute to research. Each network allows clinicians to make their own decision about whether to be involved in studies. Networks consist of self-selected practices, and in the United States and the United Kingdom not all practices agree to participate in all studies. This has implications for selection bias, particularly in studies where the clinician or the practice is the subject of study. However, given the fact that care is provided for unselected patients, practice self-selection will have less impact on patient-directed research. The Nijmegen experience illustrates that there may be a time in the development of the network when membership becomes more demanding, and members may be even less representative of clinicians in general. However, none of the network directors mentioned the retention of practices and physicians as a problem. Apparently this is related to the flexible approach in recruitment.

The Wisconsin and Wessex networks hope to stimulate physicians’ personal involvement in research to create a questioning environment. This is an additional bottom-up development in creating a research culture. In this respect the Nijmegen network seems at first to be very different, functioning more as a top-down university-centered research program. This is not true, however, as the Nijmegen network has provided family practice input to the medical school for more than 20 years, and 8 of the 25 physicians to date have received the highest academic degree of MD, PhD. The Nijmegen situation represents the full circle of changed research culture, with networked family physicians in charge of an independent family practice research program.

Ownership of the research is a particularly sensitive issue that can make or break the success of a study. Only when family physicians are confident that the data collection is relevant to and compatible with the demands of routine practice will it be possible to pursue a study.³² A key function of PBRN management is close communication and negotiation between researchers and physicians. An important outcome of this communication is the role of the network in providing direct input from primary care clinicians about the relevance of proposed studies for the development of family medicine. There is a need for direct research into the interests of clinicians who have to cope with the full complexity of patient care in the community setting.

A second key function of PBRN management is to develop research methodology in the network: Better research methodology will facilitate physician involvement, assist funding, and assure the obtained data are valid. Networks develop their own momentum. Initially, simple descriptive studies are conducted, but with increasing experience PBRNs can address larger and more complex collaborative projects. This process in the Nijmegen network has already been analyzed.³³

PBRN studies may support current care practices and have a quality assurance focus in improving interventions, or cast doubt on current care practices and contribute to the development of new ones. A variety of primary care settings need to be used for these studies, given the impact of environment on the outcome of care. Evidence from small specialty settings can only be introduced directly into routine family practice to a limited degree.

The relationship between practice and research

The 3 networks expressed the need to support routine practice, do research, and, at the same time, raise the quality of care in the network. An integral relationship between practice and research is apparent in each of the networks. Questioning and supporting primary care simultaneously, however, is more ambivalent than it may seem at first sight. For family medicine it is particularly important to demonstrate that interventions work under most prevailing primary care conditions (evidence-based practice).³⁴ But because a substantial number of interventions are used mainly in primary care settings, the potential of these interventions (efficacy) must also be studied in primary care. The studies of the pathophysiology of asthma fall into this category; these require ideal rather than prevailing practice conditions. This requires a choice from networks about how to perform these types of studies. The Nijmegen network represents an academic primary care setting tuned to the requirements of efficacy research. The Wisconsin and Wessex networks reflect more the existing variations in actual care, and this provides excellent opportunities for studying effectiveness of care under primary care conditions. A number of studies in the networks were descriptive, detailing the natural course of illness and disease under primary care conditions. These are important as they demonstrate to what extent evidence from other studies can be directly translated to practice.

The recent financial support for networks in the Netherlands⁸ and the United Kingdom⁹ heralds the increasing awareness of the importance of primary care evidence. Within the last year in the US Agency for Healthcare Research and Quality (AHRQ) has for the first time offered direct support for building PBRN infrastructure. But because the structure of research networks depend on the research agenda, there is a need for more appropriate financing of their infrastructures. The increasing awareness of the importance of practice-based research is further highlighted by the formation of the Federation of Practice-Based Research Networks (FPBRN), which is working to help networks communicate and collaborate on projects across national and international boundaries.

Conclusions

Family practice research networks are an important way of facilitating research in primary care and of assuring sufficient primary care emphasis in clinical studies. The scientific products of these networks, as judged from their publications, make valuable contributions to the evidence base of primary care.