Thalidomide records made accessible online

Tags: A Data GP Information iS Security

27 Mar 2006

The Thalidomide Trust, an organisation that supports people damaged pre-natally by the drug, has started an ambitious project to allow its beneficiaries access to their own health records and information online.

A total of 455 people, looked after by the trust, will be able to log in and access their records. If needed, individuals will be able to navigate their records and have them read out to them by voice activation and speech synthesis.

Alan Summerside, development director of the Thalidomide Trust, told delegates at Healthcare Computing 2006 during a demonstration of the screen-reading technology that work had started putting medical records online.

"We have this whole area of medical files. It was just a very difficult task. We are going through this extrication exercise. It's going to take a long time."

Part of the difficulty includes handwritten records; for instance, explained Summerside, every GP has a different way of writing prescriptions, and it's impossible to get any software to take account of all the possibilities.

"It's their information and they need to agree that it's right," said Summerside, adding that he thought it would take between "two and three years".

Summerside said that the trust had searched extensively for a document scanning system that would be up to the job, and had settled on RWM Data Management, who were also exhibiting at the show.

The Thalidomide Trust's side has been designed specifically for accessibility and use with screen readers. "The website is accessible to everybody," said Summerside. "We looked at the Disability Discrimination Act and the rules." He added that security on the records was no different to that of banking online.

While the DDA and rules such as those laid down by the World Wide Web Consortium (W3C) were useful the site still needed careful planning. "It's fine to look at rules but you have to have accessibility in the real world. Guidelines are probably more useful," said Summerside.

The site's navigation was demonstrated by one of the trust's beneficiaries, Mandy de la Mare, who browsed the site using voice commands such as "click my record" to get access to her medical records.

An online library of documents about thalidomide is also being put together with the help of the British Library, Summerside told delegates. These would be accessible in a similar fashion.

Links

Thalidomide Trust

Readers Comments

Positive news story.

glen.griffiths@interactivhealth.co.uk

30 Mar 06 20:40

I'd like to complement the Thalidomide Trust on their excellent initiative. The real success stories behind the use of technology for positive social benefit rarely make the headlines and given the attention and reaction to other news here this week it's great to read a positive story for a change.

The pragmatic approach taken to providing accessible services is a refreshingly honest view and the Trust's work in the area of web accessibility will surely add to the body of knowledge globally around best practice in this difficult technical area. There is no 'one size fits all' even with the ubiquity of the internet and Mr Summerside's comments around guidelines vs rules are welcome.

I think the readership of this newsletter can appreciate that accurate machine reading of handwriting will be a daunting task but as Mr. Summerside points out "It's their (beneficiaries') information and they need to agree that it's right," - providing an interface and interaction that will allow beneficiaries of the trust to engage in the information held on them being correct is empowering and to be applauded - I look forward to hearing how things work out over the duration of the project - Good luck.