November 2008 update: setting up the pilots

The recent Telecare Services Association’s conference in Brighton (November 2008) was an excellent opportunity to update over 600 people on the progress of the Whole System Demonstrator programme in Cornwall, Kent and Newham and introduce the 12 further sites that make up the WSD action network.

The presentation and workshop explored the practical details of recruiting people to the kind of large, randomised control trial necessary to ensure that we find a strong enough evidence base to convince a wide audience, including clinicians, commissioners and policy makers, of the value of telehealth and telecare.

Of course, there is nothing to prevent local partnerships making their own progress, but some stakeholders need a certain type and level of evidence and, unless we give it to them, it will be difficult to change their behaviours and the way they design services in the future. We had to design an evaluation process of the highest order with robust evidence, and that means working with thousands, rather than hundreds, of users; we are aiming for 6,000 users in this trial.

A key feature of the evaluation design is that roll out is by practice population and to ensure an appropriate mix of disease prevalence, deprivation, practices sizes etc, we have to attract a large number of practices to participate. We have also developed a memorandum of understanding (MOU), detailing what the practice can expect from the WSD programme and what we expect from them. The practices sign this MOU before entering the trial.

The three pilot sites involved in the programme have carried out extensive data analysis to find people eligible for the trial. This means looking across health and social care records, handling data quality issues, looking at unplanned care such as emergency admissions to ensure they relate to a long-term condition, and identifying people who are not well-known to service providers. Indeed, finding a significant number of eligible people that are not case-managed and the quality of some data (for example ensuring all health and social care records contain an individual's NHS number) has taken some time to deal with.

The recruitment process starts with service users receiving letters and a telephone call, followed by a home visit to ensure proper consent to being involved in the trial, that they are aware of the nature of telehealth and telecare, and to gain agreement to data being shared across organisations. A baseline evaluation interview, assessment of need and tests are made prior to installation of any equipment (tests are necessary for people who have not had a clinical measure associated with their condition in the last six months, in order to establish the severity of their condition prior to the trial). One thing we’ve learnt is that we have to be able to handle requests for out of hours assessments and installations.

It can take 80 days or longer from a practice signing the MOU to a person in that practice going live on the trial. It seems like a long while but it’s necessary to ensure the trial is robust and every effort is being made to streamline the process and bring that time down. The majority of the steps taken on the WSD programme would be required in a mainstream roll out so we’re confident that we’re learning lessons that will benefit others.

Once we have consent, needs have been assessed and an appropriate telehealth/telecare package determined, the equipment needs to be installed and parameters put in place for handling alerts, monitoring and response arrangements. Further evaluation interviews are carried out at 3 and 12 months with appropriate data collected in the meantime. At the end of the trial clinical measures will be taken once again to establish the clinical effectiveness of the interventions.

Of course, following a period of growth in telecare, many sites around the country are pushing ahead with increasing numbers of small- and medium-scale telehealth programmes, including the 12 sites involved in the WSDAN research who will contribute to the knowledge and evidence being gained at the three pilot sites.