Appendix Table 3.

Key Activities at Establishment and Relevant Quotations

Key ActivitiesName of PBRN, Nationality, and Quotations
Initiating networks with routine collection of dataThe Nijmegen Family Practice Academic Network (NL): “The Nijmegen network collects patient-related data on an ongoing basis.” (van Weel 2000) “In a practice-based setting, data were collected concerning health problems patients presented to their general practitioner.” (van Weel 2008)
The Transition Project (Thanshis) (NL):
“54 FPs in 23 practices distributed over the Netherlands routinely collected and coded data for all face to face (direct) encounters with their listed patients.” (Okkes et al 2001)
“The project is a sentinel network of 23 general practices in Northern Ireland that report the incidence of a list of selected diseases to a central unit for analysis.” (Boydell et al 1995)
“This is a continuous and computerized database in which 42 general practitioners, working in 15 different practices in the south of the Netherlands, are participating. All relevant health problems are registered. A health problem is defined as ‘anything that has required, does or may require health-care management and has affected or could significantly affect a person’s physical or emotional well-being.''' (van den Akker et al 1998)
ASPN (USA and Canada):
“ASPN routinely collects and maintains data in four areas of network operations. First, all ASPN practices annually submit a report, which describes their active patient population,…ASPN collects data that update the characteristics of the practices and individual clinicians in ASPN…ASPN has replicated the National Ambulatory Medical Care Survey (NAMCS) in all practices and instituted by policy that requires NAMCS in all practices joining the network. Finally, ASPN practices report data on specific topics on a ‘weekly return card.’” (Green et al 1994)
Initiating networks through specific projectsCSeRMeG PBRN (Italy):
“A research project that is becoming the paradigm of the Italian research on General Practice. It started from a survey showing that treatment and control of cardiovascular risk is still far from optimal even in very high-risk patients. A group of general practitioners, coordinated by Istituto Mario Negri, wrote the protocol of the study with various proposals: Creating a research network.” (Visentin 2005)
GRACE-01 (International):
“We aimed to set up a European-wide primary care research network to deliver an ambitious observational study during one winter period. We succeeded in establishing a clinical platform for the GRACE 01 study, and many of the PCNs [primary care networks] have continued to recruit patients into subsequent GRACE studies. We achieved recruitment targets in many PCNs in GRACE 01. GRACE 01 continues to generate data that has clinical relevance.” (Nuttall et al 2011)
Tutka (Finland):
“The first study, focusing on the non-acute use of ECG in primary health care, has been carried out and infrastructure for future studies has been established.” (Koskela et al 2017)
Initiating networks focusing on capacity building activitiesTrent Focus Collaborative Research Network (UK):
“The network commenced its activities with a detailed needs assessment exercise to identify the research skills and needs of practitioners.” (Comino 2002)
WeLReN (UK):
“The evidence suggests that it is possible to operate a primary care research network in a way that develops coalitions of interest from different parts of the health care system as well as both ‘top down’ and ‘bottom up’ led projects.” (Thomas and While 2001)
“The network aims to operate as a complex adaptive learning system (a whole system approach).” (Thomas and While 2001)
TayRen (UK):
“An early priority was to increase the research skills across the network by investing in a broad range of training, from critical appraisal skills, searching for evidence, managing data to detailed research methodology.” “As research expertise within the network increased, more novice researchers could be integrated into the network, have access to training in research skills and gain experience by working within project teams.” (Pitkethly and Sullivan 2003)
The Dumfries and Galloway Primary Care Research Network (UK):
“All primary care professionals working in the region were offered an initial grant to buy time for research training to develop their own research ideas.” (Hannay 2006)
Initiating networks developing a surveySFBayCRN (ex-UCSF) (USA):
“Recognizing that collaborative research networks were needed in California, the Division of Family and Community Medicine at the University of California, San Francisco (UCSF), discussed a proposal for collaborative research at its annual meeting. A pilot study of more than 400 clinical faculty was conducted in spring 1985 by the Division of Family and Community Medicine, University of California, San Francisco, to identify physicians interested in participating in collaborative research.” (Obsborn and Petitti 1988)
“It was the goal of ORPRN to conduct a survey of its members to develop a comprehensive descriptive database of participating practices, clinicians, and patient populations.” (Fagnan et al 2007)
EAPRASnet (International):
“Every pediatrician joining the network has been asked to complete a recruitment survey. The aims of the survey were to characterize pediatricians' demographics, practice arrangements and patients' demographics, to define main incentives for research, and to learn what pediatricians view as unsolved issues that need to be studied.” (Del Torso et al 2010)
WestREN (Ireland):
“In September 2009 all member practices were issued with a questionnaire with two objectives: to describe the structure and characteristics of the member practices and to compare the results to the national profile of Irish general practice.” (Kavanagh et al 2010)
“the Task Force undertook a research study in 1999 that included a multi-site evaluation of pediatric residents' continuity experiences. CORNET was born when 42 continuity practices expressed interest and 36 programs completed the study, with over 1100 resident responses—a powerful demonstration of the potential and power of collaboration.” (Wasserman et al 2011)
“Before engaging practices in PBRN-related research, we surveyed physicians about practice-based research to assess facilitating factors regarding physician participation in practice-based research and to compare the perspectives of internists, family physicians, and pediatricians” (Gibson et al 2010)
SPAM (Switzerland):
“The Quality and Costs of Primary Care in Europe (QUALICOPC) survey served as a starting-point for creating the SPAM network.” (Selby et al 2015)
Initiating networks with a survey to identify training needs and subsequent trainingWReN (UK):
“Before setting-up the network a survey was conducted of GPs in Wessex to estimate the level of interest in research and the perceived barriers to participation in research activity.” (Smith and Dunleavey 1996)
“WReN has identified primary care teams interested in research and provided training in research methods, provision of research support and opportunities for collaborative research” (Smith and Dunleavey 1996)
SARNet (Australia):
“We designed a survey questionnaire to assess network members' research experience and interest in developing further skills.” (Ried et al 2006)
“At the time of joining SARNet, members are sent a survey asking their specific interests and needs for research and evaluation training. Data from these returned surveys are now being used when planning courses and activities to be undertaken or repeated.” (Waters et al 2004)
Initiating networks leveraging health information technology developments or aggregating electronic health dataPPRNet (USA):
“The Practice Partner Research Network (PPRNet), a practice-based research network consisting solely of physicians that use Physician Micro Systems Practice Partner, CPR system.” (Ornstein and Jenkins 1997) “PPRNet involvement is voluntary and offered to all practices that use Practice Partner's EMR.” (Wessell et al 2008)
ePCRN (USA and UK):
“The electronic infrastructure of the ePCRN is being built on a web-enabled distributed database technology that makes use of cutting-edge web technologies such as the OGSA and WSRF. This allows creation of distributed clinical information systems located at the site of practice that can be appropriately and securely linked together. Exciting possibilities for this technology include the potential for patient eligibility searches across wide geographic areas, real-time video conferencing, implementation of medical record communication standards, and real-time clinician access to standard clinical performance measures.” (Peterson et al 2006)
“A federated network links geographically and organizationally separate databases so that a single database query can return results from multiple databases while maintaining the privacy and confidentiality of patient data.” (Pace et al 2009)
CPCSSN (Canada):
“In 2008, PHAC [Public Health Agency of Canada] issued a request for proposal for a primary care sentinel surveillance system for chronic disease.” “All of these academic primary care research networks had associated family medicine practices that used EMRs…Because of the work involved with assessing data extraction capabilities from individual EMRs, each network was restricted to recruiting up to 10 practices using the same EMR.” (Birtwhistle et al 2009)
IPCRN (Ireland):
“Through participation in the IPCRN, the extraction of anonymised patient prescribing records is possible through the integration of an electronic tool for remote data extraction into the General Practitioner's (GP) patient management software system.” (Galvin et al 2015)
Initiating networks developing a patient cohortTARGet Kids! (Canada):
The development of an open longitudinal cohort of children enrolling from early childhood and following-up until adolescence. “The Applied Research Group for Kids (TARGet Kids!) is an ongoing open longitudinal cohort study enrolling healthy children (from birth to 5 years of age) and following them into adolescence.” (Carsley et al 2015)
“This paper describes the development of a different type of primary care research laboratory—a cohort of adult patients recruited from a representative sample of primary care offices and maintained for use on multiple projects. The cohort, the North Carolina Health Project (NCHP) research cohort, was developed by faculty of the University of North Carolina (UNC), in collaboration with the North Carolina Academy of Family Physicians, for the purpose of facilitating research on chronic disease and related health care problems commonly addressed in primary care settings. As such, it may represent a new model of primary care research infrastructure development—different from, and complementary to, traditional PBRNs.” (Sloane et al 2006)
Initiating networks following other approaches or combinations of approachesHARNET (USA): Peer intellectual exchange and development of research questions
“The HARNET came into existence as an outgrowth of the Harrisburg (Pa) Hospital Family Practice Residency Program. In 1988, clinicians from six local practices (four suburban and semirural private practices and two residency-based family practice centers in urban and semirural areas) met to discuss their mutual interest in practice-based research. Clinicians from these practices teach in the family practice residency program. Initial discussions held at monthly faculty meetings centered on a list of clinical research questions arising from the members' practices.” (Slawson et al 1993)
CDN (USA): Development of a peer network for implementation of better practice and to start a big-scale research project
“Since the mid-1980s, clinicians working in community and migrant health centers formed clinical networks to provide administrative and clinical training, regular interaction with peers, and opportunities for participation in policy formulation. The subject of this article is the most developed of the regional clinical networks, the Clinical Directors Network of Region II (CDN),” (Sardell 1996)
“During its ten-year history, CDN has responded to the needs articulated by clinicians at health centers. It has provided managerial training and clinical education, strategies for increased involvement of clinicians in health center management and opportunities for engagement in community-based primary care research…
During the 1990s, CDN's annual conferences dealt with both clinical and managerial issues, focusing on strategies for integrating epidemiological research, community-based primary care research and outcomes assessment in practices serving the medically underserved. These conferences were linked to research activities in which CDN was involved and were part of efforts to involve larger numbers of clinicians at health centers in community-based research. CDN has, since 1989, functioned as a practice-based research network.” (Sardell 1996)
COOP (USA): Developing a forum of intellectual exchange and common software
“The core of the COOP project is development of a medical information system in all practices that is tailored to the requirements of each, yet contains a basic data set common to all participants in the network.” (Nelson et al 1981, Part 1)
“As a forum for intellectual exchange, the COOP has enabled clinicians to serve as sources of information for each other, which has affected clinical practice.” (Mold and Peterson 2005)
ASPIRE (Singapore): Developing a forum of communication for potential researchers
“It [the network] serves as a forum of communication for potential researchers, a platform to exchange research ideas and a base for methodology capacity building and collaborations with external research agencies.” (Chuan and Gan 2001)
MAFPRN (USA): Developing a research panel
“In 1978 the MAFP's Committee…decided the participation in practical research was one of the best ways for practitioners to continue their educational growth. In order to foster this participation, the committee formed a small research panel of interested practitioners…This research panel's goals included (1) increased research acceptance and skills by practicing doctors, (2) development of a list of practitioners interested in research, (3) development of a technique for multiclinic collaborative projects, and (4) completion of several practical demonstration studies that would produce information about the problems and activities of practitioners.” (Solberg et al 1983)
RRNeT (USA): Linking residents to practice-based research activity
“Each year, RRNeT recruited medical students through various events and assisted them with applications to the dean's program, focusing on the current RRNeT study. Since 2006, RRNeT recruited 40 UTHSCSA medical students, four to eight per year.” (Burge and Hill 2014)
OKPRN (USA): Sharing resources
“OKPRN currently includes thirteen family practice offices across Oklahoma connected by computerized e-mail and a mission to share resources, support decision-making in private practice, and conduct research.” (Mold and Barton 1996)
SPCRN (UK): Leveraging previous PBRN experience and active in training and teaching practices
“The Scottish Primary Care Research Network was finally built upon existing networks of teaching and training practices centered on research active departments of general practice and primary care. This meant that a climate already favorable to research existed and several of the necessary skills were available.” (Sullivan et al 2014)
OCHIN (ex-Safety Net West) (USA): Development of patient-centered medical village (community centers network) with a shared EHR enabling data aggregation and colearning
“One model of shared IT resources and learning is a “patient-centered medical village…the OCHIN Community Health Information Network is an example of this model; community practices have come together collectively to form an organization that leverages shared IT expertise, resources, and data, providing members with the means to fully capitalize on new technologies that support improved care.” (DeVoe et al 2013)“The opportunity to harness data from many practices was another major facilitator of our PBRN's development and echoes others' observations about the power of networks to collect data on large numbers of diverse patients. Our PBRN's data on a large patient population is in one shared and linked EHR which is centrally maintained and housed at OCHIN. This unique data resource helped to catalyze the formation of our PBRN and obtain some early grants to conduct secondary data analyses.” (DeVoe et al 2012)
“The collaborative and its member groups also provide a structured environment with peer mentors and a shared EHR to enable practices to come together, share their individual innovations, and spread them across the network.” (DeVoe et al 2013)
CHARN (USA): Providing research capacity and infrastructure
“CHARN offers opportunities to bridge clinical practice and academic environments to improve research infrastructure and capacity.” (Likumhuva et al 2013)
ISPRN (Australia): Development of relationships and communication pathways
”The framework developed by Barnett et al (2012) was found to be more useful in its application to ISPRN, which had a better balance of face-to-face interaction than online interaction, when the seven principles were collapsed into five…: (1) the establishment of a recognized leader (to promote and facilitate research idea development); (2) the development of relationships (between network members and stakeholders); (3) the evolution of communication pathways (through various mediums); (4) the collaboration of CoP members involved in developing shared goals and objectives; and (5) the role of evaluation in improving the CoP.” (Dijkmans-Hadley et al 2015)
DD-PBRN: Collaborative management, problem solving, and cocreation in training
“The idea of a DD-PBRN slowly emerged following years of affiliation between constituent members…It developed in the context of a series of success experiences in which future PBRN members engaged in tasks beyond the scope of their usual daily work, for example, co-creating training and clinical resources and educating health professionals.” (Tyler and Werner 2014)
“self-advocates, family members, and service providers began to see a role for themselves as vitally important educators of physicians. Many became involved in ongoing training of resident physicians at their local family medicine residency training programs. They recognized that the education of health professionals was a concrete means of ensuring and advocating for better health care.” (Tyler and Werner 2014)
“Mutual respect and understanding further developed between members of these 3 communities through collaborative management of complex client situations in which extensive communication and problem-solving between groups were required.” (Tyler and Werner 2014)
HVRN: Advances of implementation science and input of stakeholders
“Advances in dissemination and implementation science and comparative effectiveness research can and should be applied to home visiting. These advances include conceptual frameworks, operationalization of framework components, approaches to match administrative data, and development of designs and analytic techniques to test multilevel factors for the dissemination, implementation, and sustainment of innovations.”
“In summary, a rigorous program of research is needed to advance the field of home visiting. Such a program should draw on advances in implementation science, input from stakeholders, and the experience of practice-based research networks.” (Duggan et al 2013)
e-PBRN (Australia): Data extraction from EHRs and an integrated care model implementation
“Electronic health records (EHR) of all patients are extracted routinely from the general practices (3 using MD3, one originally used MD2 and one using Practix) using GRHANITETM and sent encrypted to a secure data warehouse at the University of NSW.” (Taggart et al 2012)
“The overarching conceptual framework highlights the socio-ecological complexity that influences the sharing and use of skills, information and resources to maximize the benefit to the patient, community and health system over time. It includes elements identified in the review of integrated care programs…Effective integrated care requires a transformational change towards teamwork, information sharing and work practices; a systems approach to managing chronic disease; eHealth; and continuous quality improvement with ongoing monitoring and evaluation. Higher level policy drivers include reforming health care financing to promote and sustain multidisciplinary integrated care.” (Liaw et al 2011)
WPRN (USA): Leveraging existing strengths from QI activities and data sharing HIT infrastructure“Developing a practice-based research network (PBRN) with a model that integrates research and QI builds on the existing strengths of QI efforts, adding research incrementally rather than building a research program from the ground up.” (Baldwin et al 2012)
WPRN (USA): A HIT infrastructure of data sharing across practices
“Our CTSA efforts at the University of Washington's Institute of Translational Health Sciences (ITHS) include the Locally Controlled Data QUery, Extraction, Standardization and Translation (LC Data QUEST) pilot project aimed at creating data sharing capacity within the Washington, Wyoming, Alaska, Montana, Idaho region across primary care based practices.” (Stephens et al 2012)
ACORN (Australia): Developing a survey across the practitioners and developing a database of research interested practitioners
“One major task for the ACORN Project Steering Committee was to decide the method by which to recruit registered chiropractors via the invitation pack (database questionnaire and ACORN national practitioner database consent form).” “the ACORN project initially employs what we call a sub-study model to PBRN design whereby initial data collection is focused exclusively on practitioner-relevant information collected via self-report aimed at establishing a practitioner PBRN database.” (Adams et al 2016)
ULEARN-GP (Ireland): Developing a profiling survey and in-depth interviews on research engagement on GPs
“A profiling survey questionnaire was posted and e-mailed to all practices affiliated with the University of Limerick Graduate Entry Medical School…The profiling questionnaire used in the study gathered demographic details on practices, including details on practice staff, organization, size and academic activity…GPs affiliated with the University of Limerick-Graduate Entry Medical School were invited by email to participate in an interview.” (O'Regan et al 2020)
PPHAG PBRN (Samoa, Tonga, Cook Islands, Niue, and New Zealand): Developing a community advisory board to be the basis of the PBRN
“Over the next year, Rose recruited a group of Pacific Island community members, and formed the Pacific People's Health Advisory Group (PPHAG). Members were invited from personal and professional networks, reflecting the core values of connectiveness and relationships in Pacific cultures…PPHAG members discussed their areas of possible research interest over the next few months…Co-design and action research were explained—where research is actively done by, with, and for the stakeholders who will benefit from it, such as patients, community members, and clinicians, rather than done on them.” (Lamont et al 2020)
  • EHR, electronic health record; FP, family physician; GP, general practitioner; HIT, health information technology; PBRN, practice-based research network; QI, quality improvement.