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

Abstract

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 selfreported 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 implicitl...

The impact of an intensive care unit admission on the health status of relatives of intensive care survivors: A prospective cohort study in primary care

“…Information extracted from the Fame-Net database is stored secure and de-identified according to Dutch privacy legislation. Patients listed in the practices may opt-out to extract their data for research [ 21 ].…”

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

“…[47][48][49] A few of the early networks linked patient care excellence to patient-centeredness and community engagement, 29,50,51 This spread across the majority of networks over time and highlighted the importance of patient-engagement to improve patient outcomes and satisfaction. 33,40,[51][52][53][54][55][56][57][58] Fundamental components of the key elements "relationships with patients and community groups" included trusting and long-standing partnerships to promote equity and address health disparities. 25,31,[34][35][36][37][38][39]48,53,[57][58][59][60][61][62][63][64][65][66][67] Networks with more "bottom-up" governance 17,68,69 implemented Community-based Participatory Research (CBPR) methodologies at least in some of the steps of their research, to increase the impact of research on their community, 25,29,31,32,40,…”

“…33,40,[51][52][53][54][55][56][57][58] Fundamental components of the key elements "relationships with patients and community groups" included trusting and long-standing partnerships to promote equity and address health disparities. 25,31,[34][35][36][37][38][39]48,53,[57][58][59][60][61][62][63][64][65][66][67] Networks with more "bottom-up" governance 17,68,69 implemented Community-based Participatory Research (CBPR) methodologies at least in some of the steps of their research, to increase the impact of research on their community, 25,29,31,32,40,54,59,62,70 The work of Community Advisory Boards (CABs) was essential to CBPR research. 55,62,66,67,…”

“…9,38,52,89,92,97,109,136,[149][150][151][152] They disseminated their results to the government and health authorities, influenced health policies and recommendations and advocated for R&D programs and practice-based and/or community-based evidence. 29,38,40,52,57,58,70,80,81,89,92,106,109,114,120,130,149,152,153 In some countries, their recognition secured more systematic and substantial funding, via national-level initiatives. 22,86,104,114,125,154,157 In other cases, PBRNs were influenced by national initiatives and policies that either supported networks at their inception 45,[47][48][49]52,63,68,69,72,75,<...…”

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

“…It is the standard classification used by family physicians in the Netherlands, Norway, Denmark, Belgium, Ukraine, and Portugal; in addition, several other countries (Australia, Brazil, Poland, France, Finland, Japan, Morocco, and Malta) have used it in studies of health care encounters. [5][6][7][8] Use of the ICPC is hampered by many countries' requirement that morbidity be reported with ICD, even though that classification is not adequate for primary care. Additional limitations include the lack of a corresponding data model in the electronic health record (EHR) as well as the mediocre search systems available to find the correct code.…”