Improving the Reporting of Primary Care Research: Consensus Reporting Items for Studies in Primary Care-the CRISP Statement.

Primary care (PC) is a unique clinical specialty and research discipline with its own perspectives and methods. Research in this field uses varied research methods and study designs to investigate myriad topics. The diversity of PC presents challenges for reporting, and despite the proliferation of reporting guidelines, none focuses specifically on the needs of PC. The Consensus Reporting Items for Studies in Primary Care (CRISP) Checklist guides reporting of PC research to include the information needed by the diverse PC community, including practitioners, patients, and communities. CRISP complements current guidelines to enhance the reporting, dissemination, and application of PC research findings and results. Prior CRISP studies documented opportunities to improve research reporting in this field. Our surveys of the international, interdisciplinary, and interprofessional PC community identified essential items to include in PC research reports. A 2-round Delphi study identified a consensus list of items considered necessary. The CRISP Checklist contains 24 items that describe the research team, patients, study participants, health conditions, clinical encounters, care teams, interventions, study measures, settings of care, and implementation of findings/results in PC. Not every item applies to every study design or topic. The CRISP guidelines inform the design and reporting of (1) studies done by PC researchers, (2) studies done by other investigators in PC populations and settings, and (3) studies intended for application in PC practice. Improved reporting of the context of the clinical services and the process of research is critical to interpreting study findings/results and applying them to diverse populations and varied settings in PC.Annals "Online First" article.

Key items for reports of primary care research: an international Delphi study.

OBJECTIVE: Reporting guidelines can improve dissemination and application of findings and help avoid research waste. Recent studies reveal opportunities to improve primary care (PC) reporting. Despite increasing numbers of guidelines, none exists for PC research. This study aims to prioritise candidate reporting items to inform a reporting guideline for PC research. DESIGN: Delphi study conducted by the Consensus Reporting Items for Studies in Primary Care (CRISP) Working Group. SETTING: International online survey. PARTICIPANTS: Interdisciplinary PC researchers and research users. MAIN OUTCOME MEASURES: We drew potential reporting items from literature review and a series of international, interdisciplinary surveys. Using an anonymous, online survey, we asked participants to vote on and whether each candidate item should be included, required or recommended in a PC research reporting guideline. Items advanced to the next Delphi round if they received>50% votes to include. Analysis used descriptive statistics plus synthesis of free-text responses. RESULTS: 98/116 respondents completed round 1 (84% response rate) and 89/98 completed round 2 (91%). Respondents included a variety of healthcare professions, research roles, levels of experience and all five world regions. Round 1 presented 29 potential items, and 25 moved into round 2 after rewording and combining items and adding 2 new items. A majority of round 2 respondents voted to include 23 items (90%-100% for 11 items, 80%-89% for 3 items, 70%-79% for 3 items, 60%-69% for 3 items and 50%-59% for 3 items). CONCLUSION: Our Delphi study identified items to guide the reporting of PC research that has broad endorsement from the community of producers and users of PC research. We will now use these results to inform the final development of the CRISP guidance for reporting PC research.

Improving Primary Health Care Data With ICPC-3: From a Medical to a Person-Centered Perspective.

The World Organization of Family Doctors (WONCA) developed the third edition of the International Classification of Primary Care (ICPC-3) to support the shift from a medical perspective to a person-centered perspective in primary health care. The previous editions (ICPC-1 and ICPC-2) allowed description of 3 important elements of health care encounters: the reason for the encounter, the diagnosis and/or health problem, and the process of care. The ICPC-3 adds function-related information as a fourth element, thereby capturing most parts of the encounter in a single practical and concise classification. ICPC-3 thus has the potential to give more insight on patients' activities and functioning, supporting physicians in shifting from a strict medical/disease-based approach to care to a more person-centered approach. The ICPC-3 is also expanded with a new chapter for visits pertaining to immunizations and for coding of special screening examinations and public health promotion; in addition, it contains classes for programs related to reported conditions (eg, a cardiovascular program, a heart failure program) and can accommodate relevant national or regional classes. Classes are selected based on what is truly and frequently occurring in daily practice. Each class has its own codes. Less frequently used concepts pertaining to morbidity are captured as inclusions within the main classes. Implementation of the ICPC-3 in an electronic health record allows provision of meaningful feedback to primary care, and supports the exchange of information within teams and between primary and secondary care. It also gives policy makers and funders insight into what is happening in primary care and thus has the potential to improve provision of care.

A Review of 50 Years of International Literature on the External Environment of Building Practice-Based Research Networks (PBRNs).

BACKGROUND: This article is the second part of a novel scoping review of the international literature that presents those key elements that underpin the foundational activities of Practice-Based Research Networks (PBRNs). In this article, we examine the external environment and the intersection between the internal and external environment domains. METHODS: We searched electronic databases, including MEDLINE (PubMed), OVID, CINAHL (EBSCOhost), Scopus, and SAGE for publications in English between 1/1/1965 and 9/15/2021. We also searched reference lists of selected publications, gray literature and other online sources. Inductive thematic analysis was applied to construct the main themes, subthemes, and key elements from a scoping review covering up to 10 years of reported experiences of each of the 98 PBRNs that met the inclusion criteria. RESULTS: In this study we present 2 main themes: "Stakeholders at the Intersection Between the Internal and External Environment" and the "External Environment." The first is linked to the subthemes "Patient and Community Stakeholders" and "Other Healthcare Stakeholders" and 11 key elements. The second relates to the subthemes "National Health System," "Institutional/Governmental Support, National/State Policy and Regulatory Environment" "Professional Organizations," "Leveraging Previous Research and PBRN Experience and Interacting with Other Networks" and "Health Information Technology (HIT) and HIT Vendors" and 21 key elements. CONCLUSIONS: Despite variations in geography, time, and healthcare context, PBRNs shared many similar developmental experiences over the past 5 decades. Their external environment contributed significantly to their developmental trajectories during the first 10 years of their operation.

Experiences of Clinical Clerkship Students With Mindfulness-Based Stress Reduction: A Qualitative Study on Long-Term Effects.

Purpose: To explore the mindfulness practice, its long-term effects, facilitators and barriers, in clinical clerkship students 2 years after participation in an 8-week mindfulness-based stress reduction (MBSR) training. Method: A qualitative study was performed by semi-structured in-depth interviews with 16 clinical clerkship students selected by purposive sampling. Students had participated in a MBSR training 2 years before and were asked about their current mindfulness practice, and the long-term effects of the MBSR training. Thematic analysis was conducted using the constant comparison method. Data saturation was reached after 16 interviews. Results: Most interviewees were still engaged in regular, predominantly informal, mindfulness practice, although some discontinued mindfulness practice and reported an "unchanged lifestyle." Three main themes came forward; (1) "focused attention and open awareness" during daily activities as core elements of long-term mindfulness practice; (2) "changes in behavior and coping" that resulted from taking a pause, reflecting, recognizing automatic behavioral patterns and making space for a conscious response; (3) "integration in personal and professional life" by enhanced enjoyment of daily activities, improved work-life-balance and making different career choices. Barriers and facilitators in starting and maintaining mindfulness practice were (1) understanding and intention as "pre-conditions"; (2) practical, personal, and professional factors of students in maintaining practice. Conclusion: Two years after participation in a MBSR training, many interviewees were still engaged in (mostly informal) mindfulness practice contributing to both personal and professional changes. In light of the high clerkship demands, MBSR training could be a valuable addition to medical curricula, supporting medical students in developing necessary competencies to become well-balanced professionals.

International examples of primary care COVID-19 preparedness and response: a comparison of four countries.

We report the learnings gleaned from a four-country panel (Australia, South Africa, Egypt and Nigeria) sharing their countries' COVID-19 primary healthcare approaches and implementation of policy at the World Organization of Family Doctor's World virtual conference in November. The countries differ considerably with respect to size, national economies, average age, unemployment rates and proportion of people living rurally. South Africa has fared the worst with respect to waves of COVID-19 cases and deaths. All countries introduced strategies such as border closure, COVID-19 testing, physical distancing and face masks. Australia and Nigeria mobilised primary care, but the response was mostly public health and hospital-based in South Africa and Egypt. All countries rapidly adopted telehealth. All countries emphasised the critical importance of an integrated response between primary care and public health to conduct surveillance, diagnose cases through testing, provide community-based care unless hospitalisation is required and vaccinate the population to reduce infection spread.

Purposeful Incorporation of Patient Narratives in the Medical Record in the Netherlands.

INTRODUCTION: Structuring patient and practice data into episodes formed the foundation of the earliest evidence base of family medicine. We aim to make patients' narratives part of the evidence base for family medicine by incorporating coded and structured information on the patient's reason to visit the family physician (FP) and adding the patient's personal and contextual characteristics to routine registration data. This documentation allows studies of relations between morbidity and elements of the patient story, providing more insight into the range of problems presented to primary care and in the patient-centeredness applied by FPs. METHODS: The Dutch Practice-Based Research Network (PBRN), named FaMe-Net, is the world's oldest PBRN. Seven Dutch family practices provide regular primary care and participate in the PBRN. It contains all morbidity data of the approximately 40,000 listed patients (308,000 patient-years and 2.2 million encounters from 2005 until 2019). All information belonging to 1 health problem is ordered in 1 episode. Morbidity (diagnoses), reasons for encounter (RFE), and interventions are coded according to the International Classification of Primary Care (ICPC-2). Registration occurs within the electronic health record (EHR), specially designed to facilitate the extensive registration for the PBRN. Since 2016, the network expanded routine registration with the duration of symptoms and coded personal and contextual characteristics (eg, country of birth, level of education, family history, traumatic events) obtained through the self-reported 'context survey' of listed patients. These data are added to the EHR. Registered data are extracted from the EHR and processed for scientific research.We present data on the differences in RFEs of the most prominent symptoms of COVID-19 between 2019 and 2020; the relation between the diagnosis of pneumonia and presentation of the symptom 'cough,' and how personal determinants influence the chances of final diagnoses. Lastly, we show the relation of self-reported abuse with patient's contact frequency and psychosocial problems. RESULTS: Prompt introduction of registration rules brought insight into COVID-19-related symptoms early in the pandemic. In March 2020, symptoms related to COVID-19 were presented more often than in March 2019. Chronic conditions and prevention showed a collapsing contact frequency. Telephone, email, and video consultations increased from 31% to 53%.Episodes of pneumonia most frequently started with the RFE 'cough.' A combination of 'cough' and 'fever' as RFE increases the likelihood of pneumonia, as does cough in the presence of comorbid COPD among older men. The prevalence of pneumonia is higher among patients with low socioeconomic status. DISCUSSION: The Dutch PBRN FaMe-Net has started to add elements of patients' narratives and context to decades of morbidity registration, creating options for a scientific approach to primary care's core values. Assumptions of 'pre/post chances' of the final diagnosis, already existing implicitly in FPs minds, can be elaborated and quantified by investigating the associations between multiple registered variables, including parts of patients' 'stories.' This way, we aim to make visible what is intuitively already known by FPs.

A Review of 50-Years of International Literature on the Internal Environment of Building Practice-Based Research Networks (PBRNs).

PURPOSE: Practice-based research networks (PBRNs) have developed dynamically across the world, paralleling the emergence of the primary care discipline. While this review focuses on the internal environment of PBRNs, the complete framework will be presented incrementally in future publications. METHODS: We conducted a scoping review of the published and gray literature. Electronic databases, including MEDLINE (PubMed), OVID, CINAHL (EBSCOhost), Scopus, and SAGE Premier, were searched for publications between January 1, 1965 and December 31, 2020 for English-language articles. Rigorous inclusion/exclusion criteria were implemented to identify relevant publications, and inductive thematic analysis was applied to elucidate key elements, subthemes, and themes. Social network theory was used to synthesize findings. RESULTS: A total of 229 publications described the establishment of 93 PBRNs in 15 countries that met the inclusion criteria. The overall framework yielded 3 main themes, 12 subthemes, and 57 key elements. Key PBRN activities included relationship building between academia and practitioners and development of a learning environment through multidirectional communication. CONCLUSIONS: PBRNs across many countries contributed significantly to shaping the landscape of primary health care and became an integral part of it. Many common features within the sphere of PBRNs can be identified that seem to promote their establishment across the world.

Clinician Use of Primary Care Research Reports.

PURPOSE: To assess how primary care practitioners use reports of general health care (GHC) and primary care (PC) research and how well reports deliver what they need to inform clinical practice. METHODS: International, interprofessional online survey, 2019, of primary care clinicians who see patients at least half time. Respondents used frequency scales to report how often they access both GHC and PC research and how frequently reports meet needs. Free-text short comments recorded comments and suggestions. RESULTS: Survey yielded 252 respondents across 29 nations, 55% (121) women, including 88% (195) physicians, nurses 5% (11), and physician assistants 3% (7). Practitioners read research reports frequently but find they usually fail to meet their needs. For PC research, 33% (77) accessed original reports in academic journals weekly or daily, and 36% found reports meet needs "frequently" or "always." They access reports of GHC research slightly more often but find them somewhat less useful. CONCLUSIONS: PC practitioners access original research in academic journals frequently but find reports meet information needs less than half the time. PC research reflects the unique PC setting and so reporting has distinct focus, needs, and challenges. Practitioners desire improved reporting of study context, interventions, relationships, generalizability, and implementation.

Developing measures to capture the true value of primary care.

Primary care (PC) is an essential building block for any high quality healthcare system, and has a particularly positive impact on vulnerable patients. It contributes to the overall performance of health systems, and countries that reorient their health system towards PC are better prepared to achieve universal health coverage. Monitoring the actual performance of PC in health systems is essential health policy to support PC. However, current indicators are often too narrowly defined to account for quality of care in the complex populations with which PC deals. This article reviews a number of conceptual frameworks developed to capture PC values in robust measures and indicators that can inform policy and practice performance. Each have benefits and limitations. Further work is needed to develop meaningful primary health care (PHC) and PC measures to inform strategic action by policymakers and governments for improved overall performance of health systems.

Improving the Reporting of Primary Care Research: An International Survey of Researchers.

PURPOSE: To assess opportunities to improve reporting of primary care (PC) research to better meet the needs of its varied users. METHODS: International, interprofessional online survey of PC researchers and users, 2018 to 2019. Respondents used Likert scales to rate frequency of difficulties in interpreting, synthesizing, and applying PC research reports. Free-text short answers were categorized by template analysis to record experiences, concerns, and suggestions. Areas of need were checked across existing reporting guidelines. RESULTS: Survey yielded 255 respondents across 24 nations, including 138 women (54.1%), 169 physicians (60%), 32 scientists (11%), 20 educators (7%), and 18 public health professionals (6%). Overall, 37.4% indicated difficulties using PC research reports "50% or more of the time." The most common problems were synthesizing findings (58%) and assessing generalizability (42%). Difficulty was reported by 49% for qualitative, 46% for mixed methods, and 38% for observational research. Most users wanted richer reporting of theoretical foundation (53.7%); teams, roles, and organization of care (53.4%); and patient involvement in the research process (52.7%). Few reported difficulties with ethics or disclosure of funding or conflicts. Free-text answers described special challenges in reporting PC research: context of clinical care and setting; practical details of interventions; patient-clinician and team relationships; and generalizability, applicability and impact in the great variety of PC settings. Cross-check showed that few current reporting guidelines focus on these needs. CONCLUSIONS: Opportunities exist to improve the reporting of PC research to make it more useful for its many users, suggesting a role for a PC research reporting guideline.

The COVID-19 Pandemic in Nijmegen, the Netherlands: Changes in Presented Health Problems and Demand for Primary Care.

We studied the changes in presented health problems and demand for primary care since the outbreak of coronavirus disease 2019 (COVID-19) in the Netherlands. We analyzed prominent symptom features of COVID-19, and COVID-19 itself as the reason for encounter. Also, we analyzed the number and type of encounters for common important health problems. Respiratory tract symptoms related to COVID-19 were presented more often in 2020 than in 2019. We observed a dramatic increase of telephone/e-mail/Internet consultations in the months after the outbreak. Contacts for other health problems such as prevention and acute and chronic conditions plummeted substantially (P <0.001); mental health problems stabilized.

Lessons on the COVID-19 pandemic, for and by primary care professionals worldwide.

The COVID-19 pandemic has modified organisation and processes of primary care. In this paper, we aim to summarise experiences of international primary care systems. We explored personal accounts and findings in reporting on the early experiences from primary care during the pandemic, through the online Global Forum on Universal Health Coverage and Primary Health Care. During the early stage of the pandemic, primary care continued as the first point of contact to the health system but was poorly informed by policy makers on how to fulfil its role and ill equipped to provide care while protecting staff and patients against further spread of the infection. In many countries, the creativity and initiatives of local health professionals led to the introduction or extension of the use of telephone, e-mail and virtual consulting, and introduced triaging to separate 'suspected' COVID-19 from non-COVID-19 care. There were substantial concerns of collateral damage to the health of the population due to abandoned or postponed routine care. The pandemic presents important lessons to strengthen health systems through better connection between public health, primary care, and secondary care to cope better with future waves of this and other pandemics.

Priorities for primary health care policy implementation: recommendations from the combined experience of six countries in the Asia-Pacific.

Primary health care is essential for equitable, cost-effective and sustainable health care. It is the cornerstone to achieving universal health coverage against a backdrop of rising health expenditure and aging populations. Implementing strong primary health care requires grassroots understanding of health system performance. Comparing successes and barriers between countries may help identify mutual challenges and possible solutions. This paper compares and analyses primary health care policy in Australia, Malaysia, Mongolia, Myanmar, Thailand and Vietnam. Data were collected at the World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (WONCA) Asia-Pacific regional conference in November 2017 using a predetermined framework. The six countries varied in maturity of their primary health care systems, including the extent to which family doctors contribute to care delivery. Challenges included an insufficient trained and competent workforce, particularly in rural and remote communities, and deficits in coordination within primary health care, as well as between primary and secondary care. Asia-Pacific regional policy needs to: (1) focus on better collaboration between public and private sectors; (2) take a structured approach to information sharing by bridging gaps in technology, health literacy and interprofessional working; (3) build systems that can evaluate and improve quality of care; and (4) promote community-based, high-quality training programs.

Fostering global primary care research: a capacity-building approach.

The Alma Ata and Astana Declarations reaffirm the importance of high-quality primary healthcare (PHC), yet the capacity to undertake PHC research-a core element of high-quality PHC-in low-income and middle-income countries (LMIC) is limited. Our aim is to explore the current risks or barriers to primary care research capacity building, identify the ongoing tensions that need to be resolved and offer some solutions, focusing on emerging contexts. This paper arose from a workshop held at the 2019 North American Primary Care Research Group Annual Meeting addressing research capacity building in LMICs. Five case studies (three from Africa, one from South-East Asia and one from South America) illustrate tensions and solutions to strengthening PHC research around the world. Research must be conducted in local contexts and be responsive to the needs of patients, populations and practitioners in the community. The case studies exemplify that research capacity can be strengthened at the micro (practice), meso (institutional) and macro (national policy and international collaboration) levels. Clinicians may lack coverage to enable research time; however, practice-based research is precisely the most relevant for PHC. Increasing research capacity requires local skills, training, investment in infrastructure, and support of local academics and PHC service providers to select, host and manage locally needed research, as well as to disseminate findings to impact local practice and policy. Reliance on funding from high-income countries may limit projects of higher priority in LMIC, and 'brain drain' may reduce available research support; however, we provide recommendations on how to deal with these tensions.

Disparities in cancer-related healthcare among people with intellectual disabilities: A population-based cohort study with health insurance claims data.

BACKGROUND: Concerns have been raised about the accessibility and quality of cancer-related care for people with intellectual disabilities (ID). However, there is limited insight into cancer incidence and the utilization of cancer care at the ID population level to inform targeted cancer control strategies. Therefore, we aimed to examine differences in the utilization of cancer-related care between people with and without ID, identified through diagnostic codes on health insurance claims. METHODS: In a population-based cohort study, Dutch individuals of all ages who received residential care through the Chronic Care Act due to an ID (n = 65 183) and an age and sex-matched sample of persons without ID (1:2 ratio), who were cancer-free at enrollment in 2013 were followed through 2015. Incidence rates (IRs) of newly started cancer care and IR ratios (IRRs) with 95% CIs were used to compare groups. Separate analyses were performed per cancer type. RESULTS: Individuals with ID received less cancer-related care than individuals without (IRR = 0.64, 95% CI 0.62-0.66). Differences increased with age and were larger for females than for males. Utilization of care for cancers within the national screening program (female breast, cervical, and colon cancer) was lower for people with ID compared to people without ID. CONCLUSION: Cancer may be underdiagnosed and/or undertreated in people with ID, or cancer is truly less prevalent in this population. In particular, the differences detected between males and females with ID, and the potential underutilization of national screening programs, require urgent follow-up investigations.