In current clinical practice large amounts of data are gathered during routine patient care. Very little of these data are available for research purposes because data are not recorded in a structured way. Here we describe an EP which facilitates the EN to collect data in a structured way with minimal effort of the caregivers themselves. This EP offers several opportunities.
Since the start of inclusion, in June 2011, 1500 patients were invited to participate. At present 740 patients (49%) have completed the baseline questionnaire. Most patients that have not completed the questionnaire are known asthmatic patients that visit their doctor once per year. These patients will fill in the questionnaire shortly before their next doctor visit. In 95% of the cases informed consent was given to use EP-data for research purposes. This shows the EN is able to gather a large number of patients within a relative short period. As a result a large database will be available within a relatively short time.
Large population based observational studies, mainly birth cohort studies, have been published and mainly studied determinants of asthma
[37–39]. These data are not suitable to study treatment related asthma phenotypes of asthma in children (e.g. treatment response to inhaled steroids in asthmatic patients with eczema, compared to those without eczema; or treatment response to long-acting beta-agonists in asthmatic patients with marked airway reversibility compared to those without (or with minor) reversibility); firstly because of the small number of patients with asthma in most of these studies. Although birth cohorts may be large, asthma may be present in about 5% of the children above the age of five. The number of patients using asthma medication on regular basis, which is only a sample of this 5%, does not allow comparing therapy response within the different treatment regimens. Especially in a heterogeneous disease such as asthma, large patient numbers are needed to explore those treatment defining phenotypes.
Strict inclusion criteria are used in randomized trials to study the efficacy of treatment trials. The outcomes of those studies are applicable to this selected group, but difficult to generalize in the heterogenic asthmatic population seen in daily practice. The EP enables collection of data gathered during daily practice of an unselected population with asthma (and other atopic diseases), for research purposes. By including large samples of patients, the outcomes will be usable in daily practice. Data from the EP will be used to study the effectiveness instead of the efficacy, which makes the outcomes more applicable in daily practice.
Currently, the automatic follow up function is enabled for asthmatic patients only. However, this function will be available at the end of this year for the other disease topics included in the EP: allergic rhinoconjunctivitis, eczema, food allergy and (upper and lower-) respiratory tract infections.
Apart from the research relevance, the patients participating in the EP will be followed up in time, which means that their complaints will be monitored actively by the EP without extra effort from the doctor. In regular asthma care, the frequency of visits is often once per year in stable periods. During this visit it may be difficult for parents and patient to recall how the last 12 months have been. The EP makes it possible to have a whole year through-overview of asthma control, medical treatment response and medication use for the doctor, as well as for the patient. Transparency in hospital care is also increased by access to their test results in the electronic EP by each individual patient, which may increase the involvement of the patient in his treatment
The EP supports a more structured way of working within the collaborative network. This may support the use and implementation of national guidelines on atopic diseases. Each participating hospital creates its own patient database. With this database the performance of each centre can be monitored and compared to other centers. Furthermore, working strategies or other knowledge can be exchanged to improve daily practice within the centers.
Due to the use of a web based application, there will be a selection in the population that is included in the EP. Currently in the Netherlands, 1% of all persons between 11–45 years of age do not have access to internet at home
. The main reason for not having internet-access is ‘no interest’. Because financial reasons seem to play a much smaller role, this will probably not lead to a selection in our patient group (in social economic state). However, also a good understanding of, and ability to read the Dutch language is an inclusion criterion. This will lead to a selection of patients, because the 1.5 million functional analphabetic persons in the Netherlands will mainly evolve within the lower social economic class. One third of those persons are foreigners
. How large this selection is will be analyzed.
We conclude that the use of current web-based services like the described EP can be helpful to support extensive data collection in Expert Networks.