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Kitemarks and Kitchen Table Web Sites

From E-Government Bulletin

The safety and quality of health information available over the Internet and the need to involve patients in developing information services were among the topics of debate in Future Health Forum, an online think-tank run earlier this month by E-Government Bulletin publisher Headstar with sponsorship from Deloitte and Touche.

Bob Gann, Managing Director of NHS Direct Online, told the debate: "We cannot possibly police the Internet - nor should we seek to do so. Our objective in NHS Direct Online is simply to make it easier for people to find good information than bad.

"We still need to do a lot of work on developing criteria for good information. The NHS Plan recognises this in its commitment to kitemarking under the aegis of 'NHSPlus'. We need to strike a balance between quality criteria which focus on the issues of design, navigability, production values and so on and those of content value. A parent of a child with a rare disorder for example may find considerable support in a 'kitchen table' website which may be crudely designed but contain uniquely valuable information and shared experience."

However Rod Ward, Lecturer at the School of Nursing and Midwifery, University of Sheffield, said: "I do not believe in kitemarking or star ratings because of the problems in deciding who you are kitemarking it for, or what their needs are - and the changing nature of the information. Codes of conduct such as that run by the Health on the Net Foundation are useful, however it has already been found that these have been abused and policing them is a nightmare.

"Any site or organisation which attempts to evaluate and filter the quality sites must publish its evaluation criteria".

Paul Johnson, Director of Telemonitoring Research at the Women's Centre, John Radcliffe Hospital NHS Trust, said: "One approach to the problem of authentic websites and the digital divide created by e-health is to involve the patient in the development of websites. Many studies already show that patients do not understand the disease they have, any guidelines provided or the relevance to themselves.

"This applies especially to the socially excluded. A website could include patient health information (controlled by the patient) and a website that addresses their needs including health information in a format that they want. After years of conducting research on risk aspects of pregnancy as well as care in the community and failing to enlist the most socially disadvantaged women - often teenagers in the UK - we have embarked on developing a website for antenatal care (not just advice), information and education in the widest sense in partnership with such women.

"Many other clinical conditions should be amenable to this approach. Merely warning people of good and bad sites will have limited benefit as long as the public feel disenchanted with the health service on offer. There are no short cuts to patient empowerment - unwitting disempowerment is only one risk".

Tim Willis, Assistant Director of the UK government's 'Foresight' research programme, said: "There may be an emerging role for 'infomediaries' - systems and organisations that weed information targeted to the individual. I agree that the NHS has a particularly strong brand name to exploit opportunities, but there are others. Parallel to this is the increasing role of patient group websites providing information for the professions, public and patients. Information from experienced patients is valuable to those recently diagnosed."

The role of online learning for clinical professionals and others in the health services also came under the spotlight. Ruth Garner, Consultant Occupational Therapist with Learn Net Advisors and Research, said: "Centrally-funded continuing professional development resources which use the multimedia capabilities of the web to provide up to date educational materials for clinical practice is a good idea. However, this is mainly useful on one end of the spectrum of learning - where there is an immediate need to know something.

"The other end of the spectrum is the learning that can be applied in the wider context of the organisation - collaborative learning that allows people to share knowledge, skills and experience. This type of learning needs to be based within the virtual classroom. Virtual learning doesn't necessarily take people away from the patient's bedside if it is constructed in a way that allows people to study when and where they are able to.

"In Birmingham we have also applied this methodology to people with disabilities - providing remote vocational guidance to them in their own home, opening up opportunities they wouldn't otherwise have had. This has involved developing new roles such as virtual mentoring.

"However, we have a long way to go in terms of changing the hearts and minds of healthcare professionals to find new ways of studying and working. We also have a long way to go in terms of awarding bodies accepting on-line learning as a credible way of learning and being assessed."

Ellaine Muscroft, Regional Consultant with the family support charity Home Start, said: "The voluntary sector appears to be leading in practical IT applications in preventative health care - for example the reduction of isolation and anxiety. The Samaritans 'listen' online. The growth of the electronic village hall has been swift - Barnsley electronic village hall has approximately 100 members, many of whom are unemployed and/or elderly. The Virtual Volunteering movement has clear potential for massive health benefit".

The full report of the debate will be published in the New Year at its web site: http://www.futurehealthforum.com/

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