Understanding why people do not wish to be involved in the WSD trial – a first look at non-starters and leavers
WSDAN Event in Leeds – 11 June 2009
Tim Ellis, WSD Programme Manager
The Whole System Demonstrator programme across three sites in England is probably the largest randomised controlled trial in the world looking at the use of telecare and telehealth technologies with an intervention and control group.
In previous WSDAN feature articles, I have looked at the important steps in the trial, leading from the identification of eligible candidates through to the installation of technology in the home. At every step, there is the possibility that people do not wish to get involved or, having become involved, drop out of the trial.
Although the trial includes a number of additional steps for ethical reasons, setting out the key reasons why people leave may be helpful for any organisation considering large-scale implementation of these technologies.
The sites are still compiling and cleansing data, so the statistics and charts included in the presentation slides are not complete. They do, however, provide useful information for planning large-scale services.
Overall findings cannot be reported until the last entrant has been in the trial for a year after equipment has been installed. As we are aiming to complete the trial reports before the end of 2010, it is important for us to get to the maximum number of people on the trial as soon as possible.
To be eligible to take part in the trial individuals must meet the relevant telecare or telehealth eligibility criteria which have been agreed across all three sites.
As this is a research study, there is a consent process. The WSD sites send people a letter via their GP or from the adult social care service asking them if they would like to take part in the trial and, if so, whether they agree to their data being shared between health and social care services and the evaluators. Invitations have been sent to more than 20,000 patient/service users.
People who agree to participate in the WSD trial (at this stage they do not know if they will be in the control or intervention group), are considered an active lead. After this point anyone who leaves the trial is classified as a ‘leaver’. Anyone who declines to participate in the WSD trial is not classified as a leaver.
Staff at the sites telephone those who agree to participate and arrange a visit (the ‘light touch’ visit). During the ‘light touch’ visit the staff explain what telecare and telehealth is, what the trial is about, and what participants’ role could be. They also check the home for suitability, eg, location of phone sockets etc. If people are still keen to participate having understood more, staff will book a needs assessment. This assessment covers the individual’s specific needs and considers what would be appropriate for them in terms of the telehealth or telecare service. If all goes well, the agreed equipment is then installed and participants are considered to be ’live’ on the trial.
The initial telephone call after people have agreed to participate is very important. The callers need to clearly explain the recruitment and assessment process and the number of contacts that will be made with the individual. At this stage there is limited impact on resources if people drop out; however, the impact is greater if people drop out after a visit has been made.
Reasons for dropping out
For telecare, very few people drop out after the ‘light touch’ visit. For telehealth, it is a more complex process, and more people drop out later in the process.
There is a particular issue for telehealth, the position in Newham. Newham has a proportionately higher black and minority ethnic community than the other two WSD sites; the telehealth equipment with video and other educational content is available in a range of languages but not for the most common languages spoken in Newham.
It has not proved easy to find a solution to the language issue within the trial construction. We did consider using separate prompt cards with translations but this would result in a significantly different user experience and would make it difficult to draw robust conclusions from the amalgamated data from all three WSD sites.
Translation costs of the video and other material into a range of languages is prohibitively expensive at this time. Telehealth manufacture is at an embryonic stage, and vendors are unwilling to invest in producing materials for anything other than the largest potential markets. We have had to accept that the trial has limitations but that the learning from the trial will help establish policy and that policy will need to consider the impact of new service models on equality.
To help us understand the issues further, WSD has funded a separate trial in Newham using a mobile device for diabetes monitoring. This smaller trial addresses the needs of a more diverse range of patients.
With any trial, there will always be a group that do not meet the eligibility criteria. Examples on the WSD programme include people who already have equipment or people who live with someone already on the trial. One of the eligibility criteria relates to use of unplanned emergency care; it is important to ensure this is related to the long-term condition rather than to an unrelated accident, for
Sometimes people are excluded from the trial. For example, when data is cross-checked across various systems, the person may not have the same long- term condition flagged on all systems. Some data needs to be cleansed where records are drawn from different systems.
Some people, simply do not have the time to be involved in the trial, it is an imposition on daily life.
Newham has a high mobility or churn of people; it is often a first port of call for new immigrants who then move to other locations to settle. This makes it difficult to monitor some people for the full year after installation.
Some people react negatively to the technology itself; it is difficult to understand the reasons for this. All three sites have experienced people declining the technology when they see it, either pictorially at the ‘light touch’ visit or, in the worst case, first hand at the time of installation.
Some people do not want additional electrical equipment in their homes. Other people are shown the equipment and what to do but do not want to operate it.
There is a small but significant number of people whose health deteriorates and they find it too difficult to use telehealth equipment – they do not want to continue or do not have the motivation to continue with the trial.
For telecare there are some issues about language (as with telehealth).
Some people go into a care home.
In some locations (eg, rural areas) there is no telephone landline.
There are a small number who are genuinely confused and do not really understand the trial.
Some people die during the trial.
A few people believe that it is not their job to play a part in their own care.
Some people may have family issues – some family and carers feel that they are responsible for playing a caring role and do not see the need for technology when they are doing everything for the service user. In these cases, the family may encourage the removal of equipment.
Putting aside all of the trial challenges and thinking about large-scale implementation in the real world, it is reassuring that once telecare and telehealth is installed there are very few drop-outs. It is hoped to have some further evaluation evidence about leavers; this is an area that we will continue to monitor.