2009 Caller Profile Analysis of the European Network of Rare Disease Help Lines

Who is calling the Help Lines of the European Network of Rare Disease Helplines?


hands reachingThe European Network of Rare Disease Help Lines (ENRDHLs) is a EURORDIS initiative that aims to increase the quantity and quality of rare disease information services. It does this by sharing technical tools and information resources amongst its members. One of the network actions that all members are requested to take part in on an annual basis is the Caller Profile Analysis (CPA). This year, four new European information services, from Romania, Portugal, Belgium and Italy, contributed to the exercise.

What is Caller Profile Analysis?


The Caller Profile Analysis consists in collecting certain basic items of call data from all member help lines during a predefined period and centralising the data at European level. Depending on the quality of the data received, the network coordinators can then make European-wide reports based on the analysis of the calls that help lines are receiving. This analysis can range from the very basic proportion of males to females using the service to more advanced predictive models showing emerging trends in rare disease patient needs across Europe. The data can also assist in convincing decision makers of the added value of help line services and the network as a whole.


This is the third year that this type of analysis is being conducted by the ENRDHLs. A record of eight help lines participated in this year’s exercise, these included:

France- Maladie Rare InfoService, France- AFM, Spain- Feder, Belgium- Radiorg, Portugal- Rarissimas, Romania- Information Center for Rare Genetic Diseases, Denmark- CSH, Italy- Uniamo.


Basic call information items such as ‘Category of caller’, ‘Purpose of call’ and ‘Answer provided’ are collected systematically for a month and centralised at EURORDIS.


This year the combined queries, for the month of November, of all the participants, represented 1128 queries, managed by 25 help line respondents.


woman on phoneThe CPA summary report shows the principal reasons people are using the services. Clearly information on disease is at the forefront of callers’ needs. Along with social care and signposting these are the three most important reasons for contacting the service. “This sort of information can be very useful for ‘start up’ help lines when deciding what kind of service to provide,” explains Shane Lynam, Health Policy Coordinator at EURORDIS. “Would they, for example, like to provide a service that is orientated more towards medical information and hire a specialised medical professional or are they more concerned with social questions. When making these decisions it is useful to know the needs of callers and then adjust their project accordingly.”


The patients themselves only account for half of the queries received by the services, the other fifty percent of the queries are either friends, family members or medical professionals. The report also shows that although electronic communication (22% percent of queries) is catching up with phone contact (33% of queries), oral communication remains the more popular method. This reoccurring trend shows that email and phone services are complementary. 86% of the people calling European help lines services are female. This may suggest that women are more likely to take the first step in finding information about their loved one’s disease.


After the group analysis all participating help lines receive a report regarding the quality of their caller profile data and what changes need to be made in order to make it easier to normalise their data.


“By participating in the Caller Profile Analysis this year we were obliged to think about the type of call information we include in our database at Radiorg,” says Lut De Baere, President of the Belgian Rare Disease Alliance and help line RadiOrg. “On the basis of the CPA Report we received, we are already making changes to the information we note regarding each query we receive, for example we have started to note the ‘orpha code’1 every time we include a disease name. This sort of feedback will be useful when we are outlining the project description for our upcoming help line project.”


The EURORDIS’ web application for help lines, called Rapsodyonline, has been designed so that the group reports can be done in a more systematic way. The help lines will export their data to the network database where it will be pooled and network activity reports can be created automatically. As more and more services start using the Rapsodyonline tool the data will become robust and the results will be even more compelling. The reports can be adjusted to reflect the needs of different stakeholders.


In terms of advocacy, this type of analysis can be used by the network coordinators to argue for the development and funding of national help line services. By showing the average number of calls being recorded by each respondent, it is possible to present concrete data on what needs to be funded. This information can be essential in a situation where a potential funder may not have a complete understanding of what a help line service involves.


Fact Sheet on RD Help LinesAll members of the network will attend the ENRDHLs’ meeting on 13 May this year, where amongst other items, the next Caller Profile Analysis will be discussed. The network meeting which is a satellite to the European Conference on Rare Diseases in Krakow on 13-15 May 2010, will serve as an opportunity for participants to get to better know each other’s way of working and to discuss the future orientations of the network for better quality of information services provided.


To take part in the next CPA or register for the Workshop, please contact: shane.lynam@eurordis.org.

For more information:


Eurordis Newsletter articles



1Orphanet is a European database of information on rare diseases. Each rare disease is given a unique disease code. It the only complete nomenclature of rare diseases that exists today. It is currently being used as a model for the preparation of the 11th edition of the WHO International Classification of Diseases.


This article was first published in the April 2010 issue of the EURORDIS newsletter.


Author: Shane Lynam & Paloma Tejada

Photo credits: © EURORDIS


Page created: 21/03/2010
Page last updated: 29/12/2010
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