This is how FaMe-Net works

Explanation of the FaMe-Net methods and concepts, and information on content and use of the Morbidity Data web pages.

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Introduction to the FaMe-Net methods

This website provides primary care morbidity data from Family Medicine Network (FaMe-Net), a practice-based research network (PBRN) located in the Netherlands. FaMe-Net is the world’s oldest and still functioning PBRN. The network is a continuation of two well-known Dutch predecessor PBRNs from which it originated after their fusion in 2013: the Continuous Morbidity Registration Nijmegen (CMR) registering epidemiology since 1967, and the ‘Transition Project’, registering since 1985.(1) 

FaMe-Net general practitioners (GPs) provide regular primary care to their listed patients. Registering for the PBRN occurs simultaneously and in the context of the Dutch healthcare system. The PBRN registration is performed for research and educational purposes. 

FaMe-Net registers ‘complete’ morbidity, i.e. all morbidity that patients present to their GP. Data are collected continuously and longitudinally. 

The participating GPs record morbidity (and other items) in their Electronic Health Record (EHR) named TransHIS, that was specially designed for the extensive data registration, facilitating education and research.

The data shown on this website are a selection of FaMe-Net’s most essential data. Concepts and terminology will be explained below. Data are extracted and periodically updated. The FaMe-Net registration is innovative, with ongoing evolvement, and contains more items than those shown on the website in the current version. As parallel processes, this website is continuously in development, with periodical addition of latest collected data, and with planned addition of more collected variables. We showed the innovations and the expansion of the FaMe-Net registration from 2016 onwards in a paper.(1)

Click here for more information on the network FaMe-Net, its historic background, the Dutch health care system, participating practices, and scientific output.

Data from the FaMe-Net database are available since 2005. Since then, all data within FaMe-Net have been uniformly classified according to ICPC-2. 

The fusion in 2013 resulted in a significant expansion of the study population with an altered age distribution: relatively more younger patients joined resulting in a smaller proportion of the 75+ group. This has an impact on the incidence and prevalence of morbidity. This is why data on this website are presented from 2014 onwards.  

Currently, data have been updated up to and including 2021, derived from six family practices (35 GPs). In these practices, more than 41.000 patients were registered at the end of 2021. 

The network and the registering practices are stable. Registering practices may sometimes join or leave the network. 

The latest update of the website has been performed in February 2023.

FaMe-Net has been shown to provide high-quality data derived from an unselected population.

FaMe-Net performs systematic quality checks of the stored data and provides registration feedback to GPs, e.g. in the registration of malignancies and deaths. Uniformity in registration of diagnoses, RFEs and interventions is achieved through continuous training and quality control programs for GPs (in training), practice assistants and practice nurses (POHs). 

The patient population in FaMe-Net is representative of the general Dutch population.(2) 

Since 2016, FaMe-Net has started to collect contextual and personal characteristics of all the listed adult patients in a structured way. Addition to the website of some variables collected in this way is planned.

Click here for more information on collected data in FaMe-Net.

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Concepts used in FaMe-Net

Below we describe the most important concepts used in FaMe-Net and how they are applied.

Episode of Care

The core concept within FaMe-Net is the Episode of Care (EoC): all data in FaMe-Net are ordered into Episodes of Care. It can be defined as ‘a health problem presented by an individual to a healthcare provider, from the first presentation until the last encounter’. EoCs have a title, the episode diagnosis, classified with ICPC-2. The episode diagnosis can be modified during the EoC. An example: an EoC is first labelled as fatigue, but the diagnosis (episode title) is changed to iron deficiency anaemia, and it later appears to be caused by colon cancer, which will be the final diagnostic label. All contact elements related to this health problem are comprised in this EoC, including specialist reports to the GP. 

Presented data from ‘Episodes of Care’ are abbreviated to ‘Episodes’ on this website.

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Reasons for Encouter (RFE)

Another essential concept used in FaMe-Net is the Reason for Encounter (RFE). 

Patients normally start the consultation with a spontaneous statement on why they visit the doctor: the Reason For Encounter. This reflects the initial presentation of the illness. This statement precedes the interaction between patient and GP, and the GP’s interpretation. RFEs are recorded regardless of the final diagnosis. FaMe-Net routinely and systematically registers all RFEs in all encounters during regular consultations, taking GPs less than a minute of time. 

The RFE(s) can be presented as a symptom (e.g. abdominal pain, a rash, cough), but also as a self-diagnosed disease (‘I’ve got the flu’; ‘I think I have migraine’; ‘I hope it’s not pneumonia again’) or a request for a particular intervention (‘I would like to have a blood test’). When multiple RFEs are presented, all are registered. The RFE(s) should be recognised by the patient as an acceptable description of the demand for care. RFE registration enables research studying associations between RFE and (final) diagnosis. RFEs in themselves have important prognostic value, for example in diagnosing cancer. (3, 4)

ICPC

All presented symptoms, complaints, diseases, and problems in FaMe-Net are classified by the GP in accordance with the International Classification of Primary Care (ICPC-2) at the highest level of accuracy and understanding. In addition to ICPC-2, diagnoses are also coded with the International Classification of Diseases and Related Health Problems (ICD-10).

Transfer to ICPC version 3 is planned, now that it has been released in December 2020. This will allow for additional recording of functioning (activities and participation) and personal preferences linked to morbidity. 

Interventions

All interventions and processes are also coded with ICPC-2. These include referral to primary or secondary care professionals, diagnostic imaging, laboratory testing, and therapeutic interventions such as medication, vaccination or surgical procedure.

ATC classification and Prescription

Prescriptions are coded according to the Anatomical Therapeutic Chemical (ATC) coding system maintained by the World Health Organization.5 

Prescription data provide detail and are a particularisation of the intervention type ‘medication’ (ICPC-2 code *50). 

Prescription data are shown by the first five characters of the ATC code by default. If desired this may be changed to a less detailed level with the first four characters of the ATC code so that prescriptions are studied in larger groups of medication. This can be changed in the report showing Relations between a chosen episode (ICPC code) and its percentage with a prescription.

Referrals

FaMe-Net distinguishes referrals to primary care professionals and to secondary (specialist) care, and the specialisms among these referral types (primary or secondary). 

Referral data are a particularisation of the intervention type ‘referral primary care’ (ICPC-2 code *66) and ‘referral secondary care’ (ICPC-2 code *67).

Encounter

Synonym: contact, consultation. 

An encounter is the professional interchange between a patient and a GP. Healthcare provided to patients by other team members of the general practice (practice assistants, practice nurses (Dutch: POH’s), GPs and doctors (in training) are also recorded in encounters. 

We distinguish different types of encounters (encounter types). The majority concerns consultations during office hours. Other encounter types distinguished are home visits, telephone and email consultations (by the GP or the practice assistant), out-of-hours consultations, repeat prescriptions and administrative contacts (specialist letters). They all contribute to the registered morbidity, ordered in EoCs.
One or more Episodes of Care may be dealt with at an encounter. When more than one episode is dealt with during an encounter, there are two or more sub-encounters.Every (sub)encounter has at least one RFE. The only exemption are reports (letters) from other healthcare professionals, which do not have an RFE recorded.

Encounter diagnosis

Every encounter results in an (initial) diagnostic label, which is named Encounter diagnosis in FaMe-Net. This Encounter diagnosis may or may not be the final diagnosis (EoC). An Encounter diagnosis could be tiredness, changing later in the Episode to iron deficiency anaemia, and still later to colon cancer. In FaMe-Net’s Episode registration, all these encounters contribute to the Episode (EoC) colon cancer, but we are still able to review the (temporal/preliminary) Encounter diagnoses. In general practice, many Episodes of Care consist of only one encounter.

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Registered data

Data from each encounter

The care providers of the participating general practices register all encounters with their patients using the International Classification of Primary Care (ICPC-2). All encounters are registered in episodes of care, which is explained on the homepage.

For each encounter, the following variables are systematically coded:

Patients can have contact with their general practice in different ways: physical consultation, telephone consultation, home visit or e-consultation.

Data from specialists and other healthcare providers

GPs receive letters from other healthcare providers in primary and in secondary care concerning a patient’s health problem. These letters are added to the patient’s Electronic Medical Record and are assigned to an episode of care.

The information in the letter may result in modifying the diagnosis of the episode of care. A letter may also contain information on a health problem that was not yet known by the GP. In that case, it results in the start of a new episode of care.

Data from after-hours GP care

During after office-hours, general practice emergency care is provided by a GP medical post. All encounters (physical consultation, telephone consultation, home visit) with this medical post are included in the patient’s electronic medical record. The FaMe-Net GPs add the codes of the RFE, diagnosis, performed interventions, measurements and medication for the out-of-hours encounters.

Personal and contextual characteristics of the patient

FaMe-Net has started to collect contextual and personal characteristics of all the enlisted adult patients in a structured way since 2016. Upon invitation by email, patients complete a questionnaire about personal and contextual characteristics, including for example level of education, country of birth of patient and parents, intoxications, psychotraumatic life events, and information on the family history for diabetes, cardiovascular disease and several cancer types. 

Patients are invited to update the context survey periodically. 

FaMe-Net derives the socio-economic status (SES) from the highest completed educational level, in accordance with Statistics Netherlands’ advice

Systematically coded variable data explained

ICPC-2

All presented symptoms, complaints, and diseases are classified in accordance with the International Classification of Primary Care (ICPC-2) at the highest level of accuracy and understanding. In addition to ICPC-2, diagnoses are also coded with the International Classification of Diseases and Related Health Problems (ICD-10).

Transfer to ICPC version 3 is planned, now that it has been released in December 2020. This will allow for additional recording of functioning (activities and participation) and personal preferences linked to morbidity.

Episode of Care

In FaMe-Net, all morbidity is registered in episodes of care. An episode of care can be defined as ‘a health problem presented by an individual to a healthcare provider, from the first presentation until the last encounter’. The title of an episode of care is the episode diagnosis, classified with ICPC-2. The episode diagnosis can be modified during the episode of care. For example: an episode of care is first labelled as fatigue, but after laboratory testing, the diagnosis (episode title) is changed to iron deficiency anaemia, and it later appears to be caused by colon cancer, which will be the final diagnostic label. All contact elements related to this health problem are comprised in this episode of care, including specialist reports to the GP. We often abbreviate ‘episode of care to ‘episode’. 

In our infographic, we explain how the Episode of Care is built from one or multiple contacts between patient and general practitioner (GP).

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Reasons for Encouter (RFE)

Every encounter starts with coding the Reason for Encounter (RFE). This is the spontaneous statement of the patient on why they visit the care provider. This reflects the initial presentation of the illness. This statement precedes the interaction between patient and GP and precedes the GP’s interpretation. FaMe-Net routinely and systematically registers all RFEs in all encounters. 

The RFE(s) can be presented as a symptom (e.g. abdominal pain, a rash, cough), but also as a self-diagnosed or suspected disease (‘I’ve got the flu’; ‘I think I have migraine’; ‘I hope it’s not pneumonia again’) or a request for a particular intervention (‘I would like to have a blood test’). When multiple RFEs are presented, all are registered. The RFE(s) should be recognised by the patient as an acceptable description of the demand for care. RFE registration enables research studying associations between RFE and (final) diagnosis. RFEs have important prognostic value, for example in diagnosing cancer. RFEs are coded according to the ICPC-2

Since 2016, the duration of the RFE (the duration between the start of the complaint and the GP encounter) is also coded in every encounter.

Encounter diagnosis

Diagnoses are coded according to the International Classification of Primary Care (ICPC-2) at the highest level of accuracy and understanding. This means that diagnoses are coded as a symptom (e.g. fever of back complaints) when no disease can be diagnosed and are coded as a disease (e.g. infection or back syndrome) when the care provider is convinced of a disease as diagnosis. In addition to ICPC-2, diagnoses are also coded with the International Classification of Diseases and Related Health Problems (ICD-10). The episode diagnosis can be modified during the episode of care.

Diagnostic and therapeutic interventions

All diagnostic and therapeutic interventions are coded according to the ICPC-2. Examples of interventions are diagnostic imaging, laboratory testing, medication prescription, health advice, surgical procedure, and referral to primary or secondary care professionals. 

The intervention ‘medication prescription’ is followed by the type of medication that is prescribed. 

The intervention ‘referral’ and ‘consultation’ is followed by the specialism that is referred to (e.g. neurology of physical therapy).

Measurements

All measurements made during an encounter are systematically registrated in the electronic medical record. This concerns measurements in the physical examination (e.g. temperature, blood pressure, oxygenation), variables resulting from the patient interview (e.g. smoking status) and results from laboratory testing. 

Medication

All medication prescriptions are coded according to the Anatomical Therapeutic Chemical (ATC) coding system maintained by the World Health Organization.

Click here to visit the ATC-Classification website.

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Content and use of this website

This website provides statistical and epidemiologic data from the FaMe-Net registration. The three following tab pages show different content and are labelled ‘Distributions by age and sex’, ‘Top lists’ and ‘Relations’. Data are extracted as datasets of entire calendar years and are periodically updated. Users of this website may choose to display data only from a subset of the calendar years presented. A fourth tab page presents clinical ‘Chapters’ containing data from the other three tab pages concerning a specific disease or condition. 

The tab page ‘Distributions by age and sex’ provides information about (all) Episodes and RFEs and their distribution among different age and sex categories. In addition, the age and sex distribution of (all) interventions and referrals and (all) encounter types is shown here. For all variables shown, the website user may choose to display only a specific ICPC code of an Episode, RFE, or Intervention, only a specific specialism for Referral, or only one or more specific encounter types, and their sex-age distribution. Data are expressed per 1000 patient years. Some variables may be presented in absolute numbers if desired. Finally, the tab page ‘Distributions’ shows the contributing number of patient years in this dataset and the distribution of patient years among different sex and age groups. 

The tab page ‘Top lists’ shows the most common diagnoses (Episodes and Encounter diagnoses), Reasons For Encounter (RFEs), referrals, prescriptions and (other) interventions.

The tab page ‘Relations between Episodes, RFEs and Interventions’ (abbreviated ‘Relations’) shows relations between Episodes, RFEs and Interventions. Two specific interventions can be shown in detail: Prescriptions and Referrals (to primary and to secondary care).

This function can be used for information about the relatedness between Episodes and RFEs of special interest (for example, when pneumonia, breast cancer or infectious conjunctivitis is the final diagnosis, which are commonly presented RFEs?); or to see the final outcomes (Episodes) of a specific RFE (for example, which are common final diagnoses when patients present with (RFE) tiredness, dizziness, cough?). Other relations are also provided with this tab page. For example, data on interventions, prescriptions and referrals according to an Episode of interest. But also, following an RFE of interest (e.g. abdominal pain, vaginal discharge), interventions and referrals can be shown, regardless of the final diagnosis (Episode). This gives insight in results (outcomes) following the entrance that patients provide themselves: the RFE. This adds the patient’s perspective to the traditional ‘doctor’ or ‘diagnosis driven’ perspective in epidemiologic data. Finally, this tab page provides information following a specific intervention (e.g. diagnostic imaging (*41), blood testing (*34) or immunisation (*44)) on the corresponding common final diagnoses (Episodes) or RFEs upon initial presentation.

The tab page ‘Chapters’ presents multiple chapters, each presenting a clinical condition or cluster of symptoms in textbook style. It starts with a description of the clinical course of this condition, next an outline of how the condition is recorded in FaMe-Net, followed by the epidemiologic figures (incidence and prevalence) from the website. Next, each chapter describes how the condition is generally presented in the first encounter, based on the Reasons for Encounter (RFEs). Finally, the chapters describe GPs actions related to this condition, based on interventions performed in all episodes of care. The chapters contain clickable links to data on the website. By reading chapters, the website visitor is guided through several locations on the website containing relevant information concerning this condition. This may help to get familiarised with the possibilities of this data website. Moreover, the text may help in the interpretation of the data and the identification of possible pitfalls.

Reference list:

1 Luijks H, van Boven K, Olde Hartman T, Uijen A, van Weel C, Schers H. Purposeful Incorporation of Patient Narratives in the Medical Record in the Netherlands. J Am Board Fam Med 2021; 34: 709-23.

2 Statistics Netherlands (CBS).   [updated 12-12-2019; cited 2020 18 May 2020]; Available from: https://www.cbs.nl/en-gb/figures/detail/37296eng.

3 De Jongh T, De Vries H, Grundmeijer H. Diagnostiek van alledaagse klachten. Bouwstenen voor rationeel probleemoplossen. Houten: Bohn Stafleu van Loghum; 2004.

4 Van Boven K, Uijen AA, van de Wiel N, Oskam SK, Schers HJ, Assendelft WJJ. The Diagnostic Value of the Patient’s Reason for Encounter for Diagnosing Cancer in Primary Care. J Am Board Fam Med 2017; 30: 806-12.

5 World Health Organization. ATC/DDD Index 2021.  Oslo [31 May 2021]; Available from: https://www.whocc.no/atc_ddd_index/.

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