UK telehealth trials missing minorities

Concerns have been raised that the UK’s biggest ever trial of telehealth technologies is excluding non-English speaking people, despite the promises of social inclusion.

A conference this week heard that non-English speakers and people without phones are often unable to benefit from the large-scale pilots now being developed.

The Department of Health’s Whole System Demonstrator programme is aimed at evaluating the impact of telehealth and telecare systems on the quality of life for users and carers.

The pilots are being run at scale, with 6,000 users to be recruited, and are intended to reach “a variety of demographic and geographical contexts.”

Those behind the three WSD sites say that many of those who may benefit most from telecare and telehealth systems, including non-English speakers and those without a phone line, were not able to take part.

At the WSD road show in Leeds, Tim Ellis, Department of Health WSD project manager, told EHI that the three sites chosen for the £12m programme funded by the Department of Health were chosen because of their diversity.

Ellis said: “Newham was chosen because it is considered to be inner city urban with a varied ethnic mix of population, Cornwall is very rural and quite poor and Kent is a combination of two.”

He added: “We need a large number of people on the trial in order to ensure that it is statistically valid when we present our results.” Ellis said it had proven a “real challenge” to recruit the 6,000 people needed for the trial.

Ellis explained that language issues were presenting difficulties: “Some of the telehealth systems rely on pushing information to the service user, for example, videos and questionnaires, and similarly the evaluators have a large number of questionnaires they ask users to fill in and the main language that the technology and evaluation works in is English.”

In a heated debate at the end of Ellis’s keynote speech, Professor John Cleland, who is involved with several telehealth projects at the University of Hull said: “There are limitations to every trial but you’re missing a huge amount of key people.”

He added: “The ethics board are completely out of order. This is a creeping strangulation on the research and it’s a crime that so much money is being wasted.”

Professor Sue Yeandle, co-director of the Centre for International Research on Care, Labour and Equalities, told EHI: “People are looking to us to see how telehealth and telecare can work. Of the European projects that I have worked on people are particularly interested in how such systems can help ethnic minorities and migrants and it’s very hard to find that evidence.

“When I heard that the WSDs were excluding particular groups from their trials alarm bells started ringing.”

In an interview with EHI after the debate, Ellis said that it was not the original intention to exclude such groups from the trials and that if telehealth and telecare services were to become more mainstream, such exclusions would not apply.

He said: “We have to work with the systems that are in place so that we can provide evidence for mainstream change.”

Ellis added: “There are only a very small amount of people in these areas that are being excluded and we can only work with the kit that the manufacturers provide us.”

Related audio

Podcast – Whole System Demonstrator update

Link

Whole System Demonstrator Action network

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