Primary Care Informatics Research Articles

Primary Care Informatics: Vitalizing the Bedrock of Health Care.

Primary care informatics (PCI) professionals address workflow and technology solutions in a wide spectrum of health, ranging from optimizing the experience of the individual patient in the clinic room to supporting the health of populations and augmenting the work of frontline primary care clinical teams. PCI overlaps uniquely with 2 disciplines with an impact on societal health-primary care and health informatics. Primary care is a gateway to health care access and aims to synthesize and coordinate numerous, complex elements of patients' health and medical care in a holistic manner. However, over the past 25 years, primary care has become a specialty in crisis: in a post-COVID-19 world, workforce shortages, clinician burnout, and continuing challenges in health care access all contribute to difficulties in sustaining primary care. Informatics professionals are poised to change this trajectory. In this viewpoint, we aim to inform readers of the discipline of PCI and its importance in the design, support, and maintenance of essential primary care services. Although this work focuses on primary care in the United States, which includes general internal medicine, family medicine, and pediatrics (and depending on definition, includes specialties such as obstetrics and gynecology), many of the principles outlined can also be applied to comparable health care services and settings in other countries. We highlight (1) common global challenges in primary care, (2) recent trends in the evolution of PCI (personalized medicine, population health, social drivers of health, and team-based care), and (3) opportunities to move forward PCI with current and emerging technologies using the 4Cs of primary care framework. In summary, PCI offers important contributions to health care and the informatics field, and there are many opportunities for informatics professionals to enhance the primary care experience for patients, families, and their care teams.

Use of an electronic wellness instrument in the integrated health and social care of older adults: a group concept mapping study

BackgroundHealth system fragmentation directly contributes to poor health and social outcomes for older adults with multiple chronic conditions and their care partners. Older adults often require support from primary care, multiple specialists, home care, community support services, and other health-care sectors and communication between these providers is unstructured and not standardized. Integrated and interprofessional team-based models of care are a recommended strategy to improve health service delivery to older adults with complex needs. Standardized assessment instruments deployed on digital platforms are considered a necessary component of integrated care. The aim of this study was to develop strategies to leverage an electronic wellness instrument, interRAI Check Up Self Report, to support integrated health and social care for older adults and their care partners in a community in Southern Ontario, Canada.MethodsGroup concept mapping, a participatory mixed-methods approach, was conducted. Participants included older adults, care partners, and representatives from: home care, community support services, specialized geriatric services, primary care, and health informatics. In a series of virtual meetings, participants generated ideas to implement the interRAI Check Up and rated the relative importance of these ideas. Hierarchical cluster analysis was used to map the ideas into clusters of similar statements. Participants reviewed the map to co-create an action plan.ResultsForty-one participants contributed to a cluster map of ten action areas (e.g., engagement of older adults and care partners, instrument’s ease of use, accessibility of the assessment process, person-centred process, training and education for providers, provider coordination, health information integration, health system decision support and quality improvement, and privacy and confidentiality). The health system decision support cluster was rated as the lowest relative importance and the health information integration was cluster rated as the highest relative importance.ConclusionsMany person-, provider-, and system-level factors need to be considered when implementing and using an electronic wellness instrument across health- and social-care providers. These factors are highly relevant to the integration of other standardized instruments into interprofessional team care to ensure a compassionate care approach as technology is introduced.

Towards Equitable and Resilient Digital Primary Care Systems: An International Comparison and Insight for Moving Forward.

While the COVID-19 pandemic provided a global stimulus for digital health capacity, its development has often been inequitable, short-term in planning, and lacking in health system coherence. Inclusive digital health and the development of resilient health systems are broad outcomes that require a systematic approach to achieving them. This paper from the IMIA Primary Care Informatics Working Group (WG) provides necessary first steps for the design of a digital primary care system that can support system equity and resilience. We report on digital capability and growth in maturity in four key areas: (1) Vaccination/Prevention, (2) Disease management, (3) Surveillance, and (4) Pandemic preparedness for Australia, Canada, and the United Kingdom (data from England). Our comparison looks at seasonal influenza management prior to COVID-19 (2019-20) compared to COVID-19 (winter 2020 onwards). All three countries showed growth in digital maturity from the 2019-20 management of influenza to the 2020-21 year and the management of the COVID-19 pandemic. However, the degree of progress was sporadic and uneven and has led to issues of system inequity across populations. The opportunity to use the lessons learned from COVID-19 should not be wasted. A digital health infrastructure is not enough on its own to drive health system transformation and to achieve desired outcomes such as system equity and resilience. We must define specific measures to track the growth of digital maturity, including standardized and fit-for-context data that is shared accurately across the health and socioeconomic sectors.

From telehealth to virtual primary care in Australia? A Rapid scoping review

ObjectiveThe COVID-19 pandemic and its socio-economic impacts have disrupted our health systems and society. We sought to examine informatics and digital health strategies that supported the primary care response to COVID-19 in Australia. Specifically, the review aims to answer: how Australian primary health care responded and adapted to COVID-19, the facilitators and inhibitors of the Primary care informatics and digital health enabled COVID-19 response and virtual models of care observed in Australia. MethodsWe conducted a rapid scoping review complying with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews guidelines. Two reviewers independently performed the literature search, data extraction, and synthesis of the included studies. Any disagreement in the eligibility screening, data extraction or synthesis was resolved through consensus meeting and if required. was referred to a third reviewer. Evidence was synthesised, summarised, and mapped to several themes that answer the research question s of this review. ResultsWe identified 377 papers from PubMed, Scopus, Web of Science and Embase. Following title, abstract and full-text screening, 29 eligible papers were included. The majority were “perspectives” papers. The dearth of original research into digital health and COVID-19 in primary care meant limited evidence on effectiveness, access, equity, utility, safety, and quality. Data extraction and evidence synthesis identified 14 themes corresponding to 3 research questions. Telehealth was the key digital health response in primary care, together with mobile applications and national hotlines, to enable the delivery of virtual primary care and support public health. Enablers and barriers such as workforce training, digital resources, patient experience and ethical issues, and business model and management issues were identified as important in the evolution of virtual primary care. ConclusionsCOVID-19 has transformed Australian primary care with the rapid adaptation of digital technologies to complement “in-person” primary care with telehealth and virtual models of care. The pandemic has also highlighted several literacy, maturity/readiness, and micro, meso and macro-organisational challenges with adopting and adapting telehealth to support integrated person-centred health care. There is a need for more research into how telehealth and virtual models of care can improve the access, integration, safety, and quality of virtual primary care.

Primary Care Informatics Response to Covid-19 Pandemic: Adaptation, Progress, and Lessons from Four Countries with High ICT Development.

SummaryObjective : Internationally, primary care practice had to transform in response to the COVID pandemic. Informatics issues included access, privacy, and security, as well as patient concerns of equity, safety, quality, and trust. This paper describes progress and lessons learned. Methods : IMIA Primary Care Informatics Working Group members from Australia, Canada, United Kingdom and United States developed a standardised template for collection of information. The template guided a rapid literature review. We also included experiential learning from primary care and public health perspectives. Results : All countries responded rapidly. Common themes included rapid reductions then transformation to virtual visits, pausing of non-COVID related informatics projects, all against a background of non-standardized digital development and disparate territory or state regulations and guidance. Common barriers in these four and in less-resourced countries included disparities in internet access and availability including bandwidth limitations when internet access was available, initial lack of coding standards, and fears of primary care clinicians that patients were delaying care despite the availability of televisits. Conclusions : Primary care clinicians were able to respond to the COVID crisis through telehealth and electronic record enabled change. However, the lack of coordinated national strategies and regulation, assurance of financial viability, and working in silos remained limitations. The potential for primary care informatics to transform current practice was highlighted. More research is needed to confirm preliminary observations and trends noted.

COVID-19 Surveillance in a Primary Care Sentinel Network: In-Pandemic Development of an Application Ontology.

BackgroundCreating an ontology for COVID-19 surveillance should help ensure transparency and consistency. Ontologies formalize conceptualizations at either the domain or application level. Application ontologies cross domains and are specified through testable use cases. Our use case was an extension of the role of the Oxford Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) to monitor the current pandemic and become an in-pandemic research platform.ObjectiveThis study aimed to develop an application ontology for COVID-19 that can be deployed across the various use-case domains of the RCGP RSC research and surveillance activities.MethodsWe described our domain-specific use case. The actor was the RCGP RSC sentinel network, the system was the course of the COVID-19 pandemic, and the outcomes were the spread and effect of mitigation measures. We used our established 3-step method to develop the ontology, separating ontological concept development from code mapping and data extract validation. We developed a coding system–independent COVID-19 case identification algorithm. As there were no gold-standard pandemic surveillance ontologies, we conducted a rapid Delphi consensus exercise through the International Medical Informatics Association Primary Health Care Informatics working group and extended networks.ResultsOur use-case domains included primary care, public health, virology, clinical research, and clinical informatics. Our ontology supported (1) case identification, microbiological sampling, and health outcomes at an individual practice and at the national level; (2) feedback through a dashboard; (3) a national observatory; (4) regular updates for Public Health England; and (5) transformation of a sentinel network into a trial platform. We have identified a total of 19,115 people with a definite COVID-19 status, 5226 probable cases, and 74,293 people with possible COVID-19, within the RCGP RSC network (N=5,370,225).ConclusionsThe underpinning structure of our ontological approach has coped with multiple clinical coding challenges. At a time when there is uncertainty about international comparisons, clarity about the basis on which case definitions and outcomes are made from routine data is essential.

Does Informatics Enable or Inhibit the Delivery of Patient-centred, Coordinated, and Quality-assured Care: a Delphi Study. A Contribution of the IMIA Primary Health Care Informatics Working Group.

Primary care delivers patient-centred and coordinated care, which should be quality-assured. Much of family practice now routinely uses computerised medical record (CMR) systems, these systems being linked at varying levels to laboratories and other care providers. CMR systems have the potential to support care. To achieve a consensus among an international panel of health care professionals and informatics experts about the role of informatics in the delivery of patient-centred, coordinated, and quality-assured care. The consensus building exercise involved 20 individuals, five general practitioners and 15 informatics academics, members of the International Medical Informatics Association Primary Care Informatics Working Group. A thematic analysis of the literature was carried out according to the defined themes. The first round of the analysis developed 27 statements on how the CMR, or any other information system, including paper-based medical records, supports care delivery. Round 2 aimed at achieving a consensus about the statements of round one. Round 3 stated that there was an agreement on informatics principles and structures that should be put in place. However, there was a disagreement about the processes involved in the implementation, and about the clinical interaction with the systems after the implementation. The panel had a strong agreement about the core concepts and structures that should be put in place to support high quality care. However, this agreement evaporated over statements related to implementation. These findings reflect literature and personal experiences: whilst there is consensus about how informatics structures and processes support good quality care, implementation is difficult.

Unplanned medication discontinuation as a potential pharmacovigilance signal: a nested young person cohort study

BackgroundBecause of relatively small treatment numbers together with low adverse drug reaction (ADR) reporting rates the timely identification of ADRs affecting children and young people is problematic. The primary objective of this study was to assess the utility of unplanned medication discontinuation as a signal for possible ADRs in children and young people.MethodsUsing orlistat as an exemplar, all orlistat prescriptions issued to patients up to 18 years of age together with patient characteristics, prescription duration, co-prescribed medicines and recorded clinical (Read) codes were identified from the Primary Care Informatics Unit database between 1st Jan 2006-30th Nov 2009. Binary logistic regression was used to assess association between characteristics and discontinuation.ResultsDuring the study period, 79 patients were prescribed orlistat (81% female, median age 17 years). Unplanned medication discontinuation rates for orlistat were 52% and 77% at 1 and 3-months. Almost 20% of patients were co-prescribed an anti-depressant. One month unplanned medication discontinuation was significantly lower in the least deprived group (SIMD 1–2 compared to SIMD 9–10 OR 0.09 (95% CI0.01 – 0.83)) and those co-prescribed at least one other medication. At 3 months, discontinuation was higher in young people (≥17 yr versus, OR 3.07 (95% CI1.03 – 9.14)). Read codes were recorded for digestive, respiratory and urinary symptoms around the time of discontinuation for 24% of patients. Urinary retention was reported for 7.6% of patients.ConclusionsIdentification of unplanned medication discontinuation using large primary care datasets may be a useful tool for pharmacovigilance signal generation and detection of potential ADRs in children and young people.

A systematic review of home-based childhood obesity prevention studies.

Childhood obesity is a global epidemic. Despite emerging research about the role of the family and home on obesity risk behaviors, the evidence base for the effectiveness of home-based interventions on obesity prevention remains uncertain. The objective was to systematically review the effectiveness of home-based interventions on weight, intermediate (eg, diet and physical activity [PA]), and clinical outcomes. We searched Medline, Embase, PsychInfo, CINAHL, clinicaltrials.gov, and the Cochrane Library from inception through August 11, 2012. We included experimental and natural experimental studies with ≥1-year follow-up reporting weight-related outcomes and targeting children at home. Two independent reviewers screened studies and extracted data. We graded the strength of the evidence supporting interventions targeting diet, PA, or both for obesity prevention. We identified 6 studies; 3 tested combined interventions (diet and PA), 1 used diet intervention, 1 combined intervention with primary care and consumer health informatics components, and 1 combined intervention with school and community components. Select combined interventions had beneficial effects on fruit/vegetable intake and sedentary behaviors. However, none of the 6 studies reported a significant effect on weight outcomes. Overall, the strength of evidence is low that combined home-based interventions effectively prevent obesity. The evidence is insufficient for conclusions about home-based diet interventions or interventions implemented at home in association with other settings. The strength of evidence is low to support the effectiveness of home-based child obesity prevention programs. Additional research is needed to test interventions in the home setting, particularly those incorporating parenting strategies and addressing environmental influences.

Auditing quality in kidney disease and diabetes: is the precise the enemy of the good? A commentary on difficulties auditing pathology results containing 'greater than' or 'less than' signs

Primary care informatics is the scientific discipline which seeks to improve health andmedical care through the better use of data, information and knowledge. However, for use to be made of data they need to be provided in a form whereby they can readily be processed into information. In a previous editorial we attacked the use of codes which did not say whether a plasma (blood) glucose result was fasted, random or part of a glucose tolerance test. This time we turn our attention to the use of ‘greater than’ (>) or ‘less than’ (<) signs in pathology results and their implications for audit.

Informatics research, practice, theory and history

This issue of Informatics in Primary Care includes high-quality papers from around the world: Spain, Canada, London, Australia and Scandinavia. The papers cover the breadth of primary care informatics from the basics of choosing a dataset, via a report of how to select high-quality primary care data to how computersmight improve preventive care, history taking and prescribing. We then have a very thoughtful theoretical piece on conceptualising the facets of enduser support before ending with the inaugural James Read Memorial Lecture – which describes the history of the eponymous Read Codes.

Building consensus about eHealth in Slovene primary health care: Delphi study

BackgroundSlovenia's national eHealth strategy aims to develop an efficient, flexible and modern health care informatics framework that would be comparable to the most successful EU countries. To achieve this goal, the gap between availability and usage of information and communication technology by primary care physicians needs to be reduced.As recent efforts show, consensus on information and communication technology purpose and usage in primary care needs to be established before any national information and communication technology solutions are developed.The aim of this study was to identify the most appropriate measures in implementation of Slovene national eHealth strategy and to suggest an appropriate model for success by using the three round Delphi study.MethodsAn e-mail based, three-round Delphi study was undertaken to achieve consensus from a selected sample of nationally recognized experts from the fields of primary health care and medical informatics. The aim of this study was to identify the most appropriate measures and key obstacles in implementation of eHealth in Slovene primary health care by using the Delphi study.ResultsHigh levels of consensus on the majority of suggested measures were achieved among all study participants, as well as between the subgroups of experts from primary health care and medical informatics. All aims of the three-round Delphi study on eHealth implementation in Slovenian primary health care were achieved.ConclusionsThe three round decision Delphi process has proven to be effective for developing outcomes, ranking key priorities in primary care eHealth development, and achieving consensus among the most influential experts in that field. This consensus is an important contribution to future national eHealth strategies in the field of primary health care.

Teaching &amp; Learning Guide for: Full Disclosure of the ‘Raw Data’ of Research on Humans: Citizens’ Rights, Product Manufacturers’ Obligations and the Quality of the Scientific Database

Teaching &amp; Learning Guide for: Full Disclosure of the ‘Raw Data’ of Research on Humans: Citizens’ Rights, Product Manufacturers’ Obligations and the Quality of the Scientific Database

Complexity in practice: understanding primary care as a complex adaptive system

This series summarises new empirical research on quality improvement through case studies of the implementation of clinical governance arrangements in two primary care organisations (PCOs). To describe a new socio-technical model for effective quality improvement and clinical governance. The research strategy included a literature review, survey, in-depth interviews, participant observation and purposively sampled case studies, conducted within a social constructionist ontological perspective. This approach contextualises the origins of clinical governance and the trend towards collaborative partnerships and federated models of practice, enabled by developments in primary care informatics. People operating within multidisciplinary networks communicate with each other to determine actions that govern their most relevant concerns. Quality improvement in two PCOs is enabled through social interactions between individuals and groups with complex relationships; and information technology (IT) systems which make some aspects of the quality of care explicit. The results are real-world exemplars of the emergent properties of complex adaptive systems. Improving clinical governance in primary care requires both complex social interactions and underpinning informatics. The socio-technical lessons learned from this research should inform future management approaches.

Developing primary care informatics

This issue of Informatics in Primary Care adds to our knowledge base, setting out how we might develop the use of IT in family practice. The issue contains a number of thought provoking articles about what influences the uptake of IT, how it can catalyse change and our expectations for the next generation of electronic patient records as well as insights into how computerised decision support and access grid technologies (high powered video conferencing) can facilitate primary care research. A recent international consensus conference described current initiatives and barriers to developing primary care IT:

A Conversation with David Bates, MD, MSc, Chairman of the American Medical Informatics Association

A world-renowned physician-researcher, David Bates, MD, MSc, is Chief of the Division of General Medicine at the Brigham and Women's Hospital in Boston, MA, and a Professor at Harvard Medical School and the Harvard School of Public Health, where he is codirector of the Program in Clinical Effectiveness. He is the Medical Director of Clinical and Quality Analysis, Information Systems at Partners HealthCare System, Inc. He is also the former Chair of the National Alliance for Primary Care Informatics (NAPCI) and the Chairman of the American Medical Informatics Association (AMIA). Dr Bates' primary interests are in information technology and how it can be used to improve safety and quality. He has conducted extensive research on medication safety in particular, evaluating the incidence and preventability of adverse drug events. He is the author of over 350 publications in peer-reviewed journals.David Bates, MD, MSc.

Achieving benefit for patients in primary care informatics: the report of a international consensus workshop at Medinfo 2007

Landmark reports suggest that sharing health data between clinical computer systems should improve patient safety and the quality of care. Enhancing the use of informatics in primary care is usually a key part of these strategies. To synthesise the learning from the international use of informatics in primary care. The workshop was attended by 21 delegates drawn from all continents. There were presentations from USA, UK and the Netherlands, and informal updates from Australia, Argentina, and Sweden and the Nordic countries. These presentations were discussed in a workshop setting to identify common issues. Key principles were synthesised through a post-workshop analysis and then sorted into themes. Themes emerged about the deployment of informatics which can be applied at health service, practice and individual clinical consultation level: 1 At the health service or provider level, success appeared proportional to the extent of collaboration between a broad range of stakeholders and identification of leaders. 2 Within the practice much is currently being achieved with legacy computer systems and apparently outdated coding systems. This includes prescribing safety alerts, clinical audit and promoting computer data recording and quality. 3 In the consultation the computer is a 'big player' and may make traditional models of the consultation redundant. We should make more efforts to share learning; develop clear internationally acceptable definitions; highlight gaps between pockets of excellence and real-world practice, and most importantly suggest how they might be bridged. Knowledge synthesis from different health systems may provide a greater understanding of how the third actor (the computer) is best used in primary care.

What Is Primary Care Informatics?

Primary care informatics is an emerging academic discipline that remains undefined. The unique nature of primary care necessitates the development of its own informatics discipline. A definition of primary care informatics is proposed, which encompasses the distinctive nature of primary care. The core concepts and theory that should underpin it are described. Primary care informatics is defined as a science and as a subset of health informatics. The proposed definition is intended to focus the development of a generalizable core theory for this informatics subspecialty.

The optimum granularity for coding diagnostic data in primary care: report of a workshop of the EFMI Primary Care Informatics Working Group at MIE 2005

The EFMI Primary Care Informatics Working Group held a workshop to explore interventions used across Europe to improve the data quality in primary care computerised medical records. A plenary session reviewed the UK literature about improving data quality and then the session split into three small groups. Fifteen delegates from nine countries contributed to the workshop. These groups reported back at the end of the session. The groups defined what they meant by data quality. The principal requirement was that data must be 'fit for purpose'. The participants felt this was particularly important for diagnostic data, while recognising that the purpose might not be known at the point of data recording. They also described the barriers to recording structured and coded data. The most important were an inappropriate interface with the coding system and inappropriate granularity of codes. There was a wide range of suggestions as to how to overcome these barriers, including providing feedback, links to expert systems, education and training, use of the data for care elsewhere in the health system and mandation of electronic data recording. The workshop developed a new characteristic of data quality: 'fit for purpose'. This is different from definitions that focus on completeness, accuracy, currency, or its positive predictive value and sensitivity. The group also highlighted the importance of data quality of diagnoses, as these data are important throughout the health system as well as acting as a prompt for other interventions within the individual consultation. More research is needed into appropriate levels of granularity for diagnostic recording in primary care.

The use of routinely collected computer data for research in primary care: opportunities and challenges

Routinely collected primary care data has underpinned research that has helped define primary care as a specialty. In the early years of the discipline, data were collected manually, but digital data collection now makes large volumes of data readily available. Primary care informatics is emerging as an academic discipline for the scientific study of how to harness these data. This paper reviews how data are stored in primary care computer systems; current use of large primary care research databases; and, the opportunities and challenges for using routinely collected primary care data in research. (1) Growing volumes of routinely recorded data. (2) Improving data quality. (3) Technological progress enabling large datasets to be processed. (4) The potential to link clinical data in family practice with other data including genetic databases. (5) An established body of know-how within the international health informatics community. (1) Research methods for working with large primary care datasets are limited. (2) How to infer meaning from data. (3) Pace of change in medicine and technology. (4) Integrating systems where there is often no reliable unique identifier and between health (person-based records) and social care (care-based records-e.g. child protection). (5) Achieving appropriate levels of information security, confidentiality, and privacy. Routinely collected primary care computer data, aggregated into large databases, is used for audit, quality improvement, health service planning, epidemiological study and research. However, gaps exist in the literature about how to find relevant data, select appropriate research methods and ensure that the correct inferences are drawn.