Article Figures & Data
Figures
- Figure 1.
Change concepts in 1979 Ambulatory Sentinel Practice Network (ASPN) proposal.
Tables
Events Calling for Something New Developmental Response Mismatch between research and real-world needs
A drive to investigate and define optimal care for patients seen in community practice and how it might differ from guidelines promulgated by academic centers.A few leaders with words for the problem, local experience, a new idea, and a starter plan
ASPN proposed in 1978; endorsed by NAPCRG in 1979National doubts about the feasibility of gathering scattered, independent practices into a research enterprise
PC practices not seen as places with research skills, questions, or answers. “Research starts with questions, not networks”; “Practicing docs won’t do research.”Pull together practices already successfully doing research
Initiate a binational network with operations supported by enthusiastic volunteerism and in-kind efforts.
Publish early studies pertinent to frontline practice, with evaluations of data completeness and accuracy.PBRN research about primary care was not appreciated by most medical journals.
Most editors didn’t view primary care practice as a source of important questions and answers.Face to face visits with editors of journals to show PBRN purposes and capacities
Publish in an expanding set of appreciative journals.No playbook for how to establish and operate a PBRN
Little preexisting body of “how-tos” for running a network and studies. Processes and policies not clarified or institutionalized.Develop PBRN policies and procedures
Criteria and processes were developed for developing studies, governance and decision-making, data14 requirements and protections, publication procedures, communication channels. Share widely with other PBRNs and learn from other PBRN’s experience.Pressing need for early financial support to complement the energetic volunteerism
Funding for the PBRN itself—to maintain the network and collaboration as well as project-specific funds
With bridge funding when primary funding suddenly went awayEmbed network in existing departments of family medicine and NAPCRG while obtaining foundation funding
When primary funding stopped, FM organizations insisted practices continue as ASPN and together with health-oriented foundations, funded development and early projects, building network expenses into project budgets.
Practices and their network champions enthusiastically continued network membership and studies.The opportunity to take a developmental step toward challenging studies of societal importance.
The need to show success with well-funded timely important findings to pressing issues; demonstrate practice capacity to do researchObtain peer-reviewed research funding for large, challenging studies.
Diversify funding from other sources, such as a cooperative agreement with the Centers for Disease Control (CDC) to determine the seroprevalence of human immune deficiency virus in frontline practice.At the end of this era:
ASPN was a viable, committed network of US/Canada family physicians and practices dedicated to asking and answering questions about “health problems experienced by most of the people most of the time.”
Proof of concept led to larger and more diversified funding for more challenging studies and expand into the mainstream of research. ASPN was poised for growth.Abbreviations: PBRN, practice-based research network; ASPN, ambulatory sentinel practice network.
Events Calling for Something New Developmental Response Large, nationally important health care issues compelled practice-based research
Such health policy issues revealed the need for development and expansion of primary care and research about emerging primary care issues.Seminal studies were published via ASPN. Examples: Otitis media, HIV seroprevalence, lab errors, depression in primary care
ASPN shared its methods widely among regional primary care PBRNs and PBRNs in other specialties and urged the establishment of AHCPR.Balancing what practices and clinicians want with the needs of national research policy questions was seen as key to relevance, independence, financial sustainability and growth.
Some funders aligned with PBRN purposes, e.g., Agency for Health Care Policy and Research (AHCPR); now AHRQ with legislative requirements focused on primary care.ASPN responded to clinicians in practices AND wider national policy questions in a way that clinicians experienced as also locally meaningful.
Bring other family medicine research networks into the annual ASPN Convocation to share results and methods, build partnerships, and contemplate new studies.
Help lead national PBRN conferences sponsored by the new AHRQ Center for Primary Care Research.Trends in research design and implementation emerged to challenge practice-based research.
Addressing more complex clinical and public policy questions required methods not familiar to PBRNs, e.g. group randomized trials. Important questions outnumbered experienced PIs available to PBRNs.Recruit experienced PIs to become familiar with PBRN practice values and the strengths and constraints inherent in PBRN research Growing financial challenges came with more complex projects and network
As ASPN rose to meet new research challenges came increased difficulty sustaining more complex network infrastructure required for more complex projects.
Need recognized for alliance with a larger entity capable of ongoing infrastructure supportOverlapping sources of funding established
Foundations, NIH, AHCPR, HRSA, CDC grants & contracts provided substantial funds for larger studies.
Established indirect cost rates for ASPN and capture as direct research expenses those that could not be funded through indirect cost rates.
Partner with the AAFP as the AAFP National Research Network (NRN).At the end of this era:
ASPN had deployed a portfolio of research methods matched to different questions and published many studies, including several large ones funded by nationally recognized research organizations, e.g., AHCPR on otitis media, NIMH on Depression Care, CDC on Lab Errors, and AHRQ on Referral in Primary Care.
ASPN and many other PBRNs had become an established respected source of new and timely knowledge. Many PBRNs were established as a component of the health and health care research enterprise.
AHRQ championed PBRNs and enabled networks to share strategies and methods.
ASPN partnered with AAFP and entered Era 3 as the AAFP National Research Network.Abbreviations: PBRN, practice-based research network; ASPN, ambulatory sentinel practice network.
- Table 3.
Era 3. Scaling up and Adapting to Evolving Technology, Organizational, and Business Models in Health Care (2000–2021)
Events Calling for Something New Developmental Response Dramatic growth in number and complexity of studies along with network size.
Emergence of many PBRNs, partnerships with array of academic organizations and— other PBRNs, move into large grants and randomized trials.
Need for scaled up infrastructure with updated governance and relationshipsFull-scale governance and business model through AAFP NRN supported by internal and external relationships and partnerships with funders, agencies, and many others.
Respond in nimble fashion to emerging opportunities such as patient engagement, safety, and disparities in practices across the country.The entry and rise of information technology in practices, especially widespread adoption of EHR.
Clinician data entry added to non-research workload while providing a potential source of data for PBRN studies.The creation of federated or combined datasets allowed multiple practice / EHR databases to function as one for research.
Form DARTNet36 as a collaboration of PBRN networks and research organizations to enable the use of new datasets emerging from practice information technology without every practice having to master that separately.Migration of local practice control to distant decision-makers and systems.
Aggregations of practices; increasingly centralized, with standardized organizational processes and reduced local control.
Continued rise of volume billing and the “medical industrial complex”49Rapid adaptation of PBRN rules, tools, research protocols, participants, decision-makers, and decision-making processes.
Emphasis on patient/community engagement
Availability of large-system resources such as practice facilitation for implementing studies and other processes.Growing emphasis on patient and community engagement in research.
An imperative to better understand and care for minority or underserved patientsDo PCORI-funded studies which entail by design patient and wide stakeholder engagement.
Implement engagement broadly, beyond PCORI projects
Often to better care for minority or underserved patients in the practice and improve trust in the research enterprise.Organizational and network approaches became less local and “high touch”; experienced as remote.
Organizational constraints on use of social media reduced potential for these to connect peopleEngage clinicians and practices in multiple ways
Participate in remaining face-face meetings and technology-enabled ways to maintain relationship when travel and face-to-face is more difficult.
Maintain the voice of network members in developing ideas, questions, proposals.The limits of traditional publication to shift practice became increasingly apparent.
The gap between “what we know and what we do” remained large.Engage implementation science and practice improvement organizations to enhance dissemination for PBRN members, not only those in a study or reading scientific journals.
Broad dissemination channels to share findings to inform action in a wider circle of communities & policy-shapers.At the end of this era:
PBRNs exist on a large scale engaged in a wide range of studies providing practice-based evidence.50
Networks of networks share infrastructure and collaborate on very large studies.
The NRN provides practical know-how, mentorship, consultants, and data management services.
Findings are disseminated in a wide range of professional journals and through multiple communication channels.
Consistent PBRN infrastructure funding remains a challenge.
Practice and clinician spirit can be maintained in an environment far less personal than at ASPN origins. Yet updating ways to sustain relationship and connectivity remains a work in progress.Abbreviations: PBRN, practice-based research network; ASPN, ambulatory sentinel practice network.
