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How Ectopic Pregnancy Trust Uses Online Forums

By Dr Simon Davey

The Ectopic Pregnancy trust is successfully using the Internet to deliver information and support on this potentially fatal condition. This article describes what they did and the difference it made for their users.

What does the Ectopic Pregnancy Trust do?

One in 80 pregnancies is ectopic, meaning that the egg develops outside the fallopian tube and the pregnancy is lost, with future fertility often affected. There are at least 20,000 admissions into hospital every year and approximately five deaths per year.

The Trust raises awareness of the condition amongst women of childbearing age, the medical profession and the general public. It provides a helpline and supports research into the underlying causes, to improve earlier diagnosis and make advances in the treatment and management of ectopic pregnancies.

How does the Ectopic Pregnancy Trust use ICT?

An incidence of one in 80 pregnancies means that although the condition is common, it is not so common that women are likely to know anyone else who has had it. The Trust uses simple technologies and the ubiquity of the Internet to put people with similar health and emotional needs in touch with one another, who otherwise would never meet.

The condition is potentially fatal, so the website provides quality information on symptoms, diagnosis and treatment, written and peer-reviewed by medical experts. Because the condition is often misdiagnosed, articles on diagnosis and treatment are provided for medical professionals. The Trust also uses the site to further its own research programme by publishing a questionnaire.

It was the introduction of forums into the website that changed how the Trust operates. Forums (also called messageboards or bulletin boards) enable conversations online. Someone might post a message to say they are worried they might have an ectopic; others can respond with sympathy, understanding and information based on their own experiences. Separate forums exist for women at different stages of loss and recovery and there are passworded rooms where the moderators and volunteers can support one another.

What difference has ICT made?

The Trust now exists in many ways as an online rather than a physical organisation. Most new referrals are via the website, fundraising efforts are co-ordinated online and the forums have relieved the burden on the phone helpline. Visitors often find the website by typing their symptoms into Google. Many visitors are from overseas because the Trust is the only charity in the world for this medical condition.

The forums have enabled the sharing of quality information and emotional support in an informal setting and with a degree of anonymity. There are on average 44,000 visits a month to the forums and over 1,300 registered users, with up to 40 people online at any one time. An average 200 messages are posted daily.

The board has saved lives. Forum users once sent message after message to a woman with symptoms to convince her to go to hospital immediately - she had an ectopic and without their advice could have died.

What was learned?

Simple, inexpensive and popular technologies are often better than expensive, custom-built applications. The first messageboard was custom-built by an IT volunteer. It was difficult to maintain so the Trust switched to the free and open source phpBB bulletin board: easy to install and use, with a large community of other users.

The original messageboard went live without being properly tested and this compounded the problems with its design. The new phpBB forums underwent months of user-testing first, to iron out any problems.

Small charities can’t monitor such busy forums using paid staff alone. Moderating duties are delegated to eight trusted volunteers, who look after visitors, reading and replying to messages and ensuring everyone is welcomed.

The website has been active for six years with no funding and a web designer voluntarily keeps the site going. It’s impractical to rely on a volunteer to make changes to a large website so the Trust edit the site’s content using Adobe Contribute software and a blogging tool is used to post news onto the site.

Although this example shows that a small national charity can use the Internet to build a successful community, it’s not sustainable without secure funding, which is why the Trust has put together a plan for the website’s development. The website has twice been nominated for an E-Commerce award and in 2007 was nominated for an eWellbeing award. This kind of recognition will be invaluable in approaching funders.

Want to find out more?

Jason King (website designer)

The Ectopic Pregnancy Trust,

Maternity Unit,

The Hillingdon Hospital,

Pield Heath Road,

Uxbridge,

Middlesex UB8 3NN

Tel: 01895 238 025

Email: ept@ectopic.org

Web:  www.ectopic.org

Registered Charity No. 1071811

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