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Doktorsavhandling vid Karolinska Institutet
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Ekman, Alexandra
The use of the world wide web in epidemiological research
Fredagen den 27 oktober 2006, kl. 09.15.
Samuelssonalen, Tomtebodavägen 6, Karolinska Institutet, Solna.
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ISBN: 91-7140-948-3
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Diss: 06:260
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Abstract:
The world is becoming smaller. Through technical innovations all kind of communication is
simplified, people come closer, and borders are erased. The Internet plays a major part in this
process not only through the simplification of everyday life - but also of scientific life.
Increasingly laypersons access the immense information available on the Internet in search
for health information. The scientific society, on the other hand, lags behind. It has yet to
make use of the possibilities inherent in these technologies to their full extent. As
populations become more dynamic and geographically dispersed, this becomes a necessity in
order to collect information fundamental in epidemiological studies. As the outside world
becomes smaller, the world of the Internet and its possibilities becomes larger.
This thesis and the studies therein fall within the filed of e-epidemiology. This recently
defined scientific field includes the acquisition, maintenance, and application of
epidemiological knowledge and information using digital media such as the Internet, mobile
phones, digital paper, and digital TV. In particular, we studied the dissemination of cancer risk
sites and the collection of health information - both mediated via the Internet. Despite the
immense amount of health information available on the Internet, there are no guarantees as
to the quality of the information accessible. In study I we performed a systematic search of
the Internet and studied the quality of the found cancer risk sites. The results were
discouraging, with few websites fulfilling the demands of the quality criteria recommended by
the EU and with no improvements noted in the consecutive searches. In study II-IV we used
the Internet to collect health information from Swedish women in two large population-based
studies of 50 000 and 25 000 women respectively, aged 18-60. We demonstrated the
feasibility of using the Internet for data collection in large epidemiological studies. Level of
education and income differed somewhat between the responders to the web and paper.
Despite these differences, the bias from the association in the target population was similar
for both response methods. As the absence of bias is important for the survival of the
method, this was a very important find. Another advantage when using the web-mode is the
possibility to study the lurkers (participants that enter, start responding to, but do not
complete a web-questionnaire). As lurkers are potential responders, they present an
important goal for research aiming at preventing drop out and increasing response rates. As
such the results are another important argument for the endurance of the method. Although
the world is getting smaller in the sense of simplified communication, the opposite holds true
for the epidemiological society. The dynamic, mobile features of current populations
complicate data collection for large population-based studies.
The Internet holds
advantageous properties with the capacity to overcome these problems. The Internet access
keeps increasing in all parts of the world and all parts of society. It is important that the
scientific society realizes the need to distribute qualitative information so as to maintain the
trust and faith of a growing number of Internet users. Concurrently the Internet is facilitating
the globalization, thus complicating the collection of information from an increasingly
mobile population. The scientific society needs to make use of this innovative tool with its
possibility to erase borders and time zones, and capability to efficiently collect health
information in epidemiological studies. The world is becoming smaller
List of papers
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Can we trust cancer information on the Internet?--A comparison of interactive cancer risk sites
Ekman A, Hall P, Litton JE
Cancer Causes Control,
2005;
16(6):
765-72
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Feasibility of using web-based questionnaires in large population-based epidemiological studies
Ekman A, Dickman PW, Klint A, Weiderpass E, Litton JE
Eur J Epidemiol,
2006;
21(2):
103-11
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Optimizing the design of web-based questionnaires - experience from a population-based study among 50,000 women
Ekman A, Klint A, Dickman PW, Adami H-O, Litton J-E
Submitted
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Feasibility of using the web for a population-based survey of correlates to HPV related disease in Sweden
Ekman A, Sparen P, Dickman PW, Klint A, Litton J-E
Manuscript
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