December 2010: WSD Programme Update

Tim Ellis

Organising a major randomised controlled trial (RCT) is immensely challenging for all concerned. You can learn about RCT from our website, or use https://writing-service.org/ and read about goals, missions, etc. It does, however, provide tremendous insight into how telecare and telehealth can be implemented at scale. The rigour needed means that the details of service provision are examined with a fine toothcomb. The downside is that the intervention is fixed for the period of the trial and certain approaches must be standardised, when operationally there may otherwise be flexibility to dynamically alter the approach and the intervention.

From working on the Whole System Demonstrator (WSD) programme, bearing in mind that we have yet to see the results of the formal evaluation, we are convinced of the potential of these technologies, but the quality of implementation will make the difference in terms of realising the full potential of these technology-enabled services. Telehealth and telecare can be implemented in ways that either damage or enhance value. Get it right, and we believe these services will transform the way that people with long-term conditions are served, for the better.

The feedback from WSD service users is powerful – they really seem to like the technology with the wraparound service. Carers also appear to benefit in terms of improved lifestyle and quality of life. Of course, we are also trying to establish whether these solutions are clinically effective and cost-effective in the current financial climate.

A particular challenge faced in the WSD programme, and many other recently published studies, is recruitment of users and patients. With a controlled trial, it is not possible to actively market the services or suggest the potential benefits of telecare or telehealth to service users. Also, users and patients do not know initially whether they will be in the intervention group (users who receive the technology) or the control group. We have indicated on previous occasions that recruiting 6,191 people into the trial was only possible by engaging with 239 practices, sending out 27,000 invitation letters and carrying out 9,000 home visits across the three sites. We believe that with targeted and proactive marketing, we could have significantly enhanced our conversion rates. As it was, it took us slightly longer to recruit all the necessary people into the trial – 15 months rather than 12 – and recruitment followed a solid 12 months of preparatory work.

With a large-scale implementation, it would be possible to identify potential users who could benefit in advance – perhaps using risk stratification tools – and market the service accordingly. It would not be necessary to send out letters; however, visits and assessments would remain important. GP practices will, of course, need to be actively involved in roll-outs as well as case managers from across health and social care. Service infrastructure also needs to be in place and tested in advance of recruitment to handle alerts, monitor trends and provide appropriate escalation. The service needs to work seamlessly from day one, or confidence will be lost and word-of-mouth will limit others taking up the offer of the new service.

We have, of course, had significant scaling in telecare within the UK, with some providers operating with tens of thousands of users. We have got to this position over the past 10 years or so by steady engagement with stakeholders and, more recently, with specific funding support to help build telecare infrastructure. Recent data from the Care Quality Commission for 2010 indicate that these services are still growing in terms of additional users and expenditure. Many housing and social care services now have telecare firmly embedded in their day-to-day service provision, whether it is for ‘critical’ service users or provided as part of a prevention strategy or housing scheme.

With telehealth, the challenge is greater because of higher up-front technology costs, clinicians’ requirement for gold standard evidence, more complex infrastructure requirements, and the difficulty of identifying the people who could benefit most. Our recent WSDAN publication looks at the challenges of sustaining innovation in telecare and telehealth. We currently have no more than 10,000 telehealth installations in the UK, with a small number of primary care trusts (PCTs) now looking at major implementations of 2,000 or more. Given that there are more than 15 million people with long-term conditions in England alone, there is a long way to go before we can say that telehealth has the same market penetration as telecare.

We hope that the requirement for gold standard evidence will be met in many ways by WSD. With the WSD trial now completed (everyone on the trial intervention arm has been using telehealth or telecare for a minimum of 12 months, and some for more than two years) and the evaluation under way, the recent network event in Scotland (University of Stirling, 3 November 2010) provided an opportunity to reflect on the challenges involved in the WSD programme and some of the lessons learned from working at scale. I have nothing but admiration for the Programme Managers and their colleagues at the three sites (Cornwall, Kent and Newham) in seeing through what has been a formidable task. Now, it is down to the evaluation teams to work through the data and interviews ready for publication of their analyses around spring 2011.

There is no doubt that, all across the world, researchers are looking to establish the extent to which telehealth and telecare services can:

· promote individuals’ long-term well-being and independence

· improve individuals’ and their carers’ quality of life

· improve the working lives of staff

· be cost-effective

· be clinically effective.

There are now an estimated 200,000 telehealth users in the United States. India, Africa and China are looking at scaled telehealth and telemedicine implementations, particularly where they do not have the local infrastructure of hospitals and clinics as in the developed world. Of course, major implementations using mobile phone technology across continents at low cost could move these countries ahead of the UK in terms of rapid innovation and providing health services over very large geographic areas. A deployment of telehealth to 100,000 people in one region of China has recently been announced.

The recent New England Journal of Medicine heart failure study reminds us that promising findings from a small-scale trial led by a highly motivated clinician do not always get replicated at scale. Although a randomised controlled trial provides the best evidence, it is costly, and again, as in this trial, throws up additional questions, such as why were only 55 per cent of people using the technology after six months. [1] It is important to keep up to date with the developing evidence base and to learn from other people’s findings.

For the WSD programme, we wanted to look at telecare and telehealth at scale so that the findings are statistically significant. This would also generate a considerable amount of learning for service mainstreaming. It is a pragmatic trial, so it is closer to the real world than the conditions in some trials.

At the event in Scotland, I focused on three aspects of the WSD programme – ‘making essential’, ‘making ready’ and ‘making happen’. Getting these elements of strong overarching programme and project management right is critical.

1) ‘Making essential’ – organisational readiness

Sites needed to ensure they had established the following:

· senior management support and engagement, allocating sufficient resource to building buy-in from a wide range of stakeholders

· a shared vision and clarity about pathways and potential benefits for users and patients – what are we actually aiming for?

· clearly defined roles and responsibilities – a memorandum of understanding (MoU) was developed for key stakeholders in all of the organisations involved, including all of the GP practices. The MoU sets out what is expected from all parties

· shared funding between health and social care – Section 75 agreements, National Health Service Act 2006 – we thought that this was one way of overcoming the need for repeated discussions about who pays for what

· shared information – agreements between all of the stakeholders that were handling data, information, records, etc. Typically, there are 11 information sources to give a single picture for an individual (eg, in health, GPs, out-of-hours services, ambulance, hospitals, intermediate care and community nursing all have different systems which often had very little connectivity). We had to ensure that social care records had NHS numbers to enable the data to be joined up. A lot of time was spent cleaning up data from different systems. DH Informatics were involved in looking at how to join up the data in a more systematic way

· agreed communications – information packs, site visits, frequently asked questions (eg, is it more work for GPs?). It was important to build awareness and buy-in at all levels, and sites shared their staff across areas to talk about their experiences. There are now a range of case studies and videos available to help others build awareness more quickly (www.newhamwsdtrial.org/)

· recruitment and retention – organisations and staff can have a high turnover, so it is important to keep people up to date and provide induction for new staff. Training, competency and capability have been important, particularly for staff in public-facing roles

· appropriate governance – the make-up of the various steering groups and boards has had to change as the programme progressed in order to ensure we have the best advice

· eligibility and service model – there were long discussions around eligibility; however, this generated clinical buy-in and interesting discussions – for instance, about whether older people would be able to use telehealth devices.

We needed to engage with ministers and senior managers in the Department of Health to ensure that they understood telecare and telehealth. This meant taking them on visits to demonstration flats and arranging meetings with users and staff. Also, all of the local stakeholders across health, housing, social care, and the third sector needed to understand the services and how they needed to be involved.

2) ‘Making ready’ – building engagement

It took a year to get the organisations ready to begin the trial. It was vital that this work was completed to have any chance of meeting the aims and objectives of the trial. A decision was made not to charge for telecare within the trial.

Following the preparatory work to develop organisational readiness, we moved to the next step of building engagement. This included:

· discussions at clinical meetings – multiple times to reinforce the messages. Within the trial there are people aged 24 to 95 years using the technologies, and they were recruited via a wide range of referral routes, including memory clinics, falls clinics, voluntary groups, etc. This also raised awareness among staff from different disciplines

· organising hands-on opportunities to try the equipment – it is important for staff as well as service users to understand what the equipment can and cannot do

· recruiting champions and planning their engagement – as with any change programme, champions are vital, whether they be staff or users/carers

· using experienced people to answer questions – when there is a new intervention, it is essential to be able to respond to people’s concerns promptly and professionally

· providing administrative support and appropriate staff – each site needed a programme office

· setting recruitment targets – this helps everyone become acutely aware when there is slippage so that remedial action can be taken promptly, with additional resource if necessary. We had a project dashboard that showed actual recruitment against planned recruitment, which at times made uncomfortable reading

· recognising and rewarding recruitment success – the teams who successfully recruited in line with their plans were rewarded with additional funding to recruit more people

· addressing cross-organisational barriers – face-to-face discussion between nominated people in each organisation can help overcome many problems, but adequate time for this to happen needs to be built into their job descriptions

· data cross-checks and cleansing – not all data that is supposed to be recorded is recorded, and some data is coded incorrectly.

3) ‘Making happen’

The final phase included:

· developing important people skills – training was vital in terms of phone and personal contact with users, following up alerts and other problems. We aimed for consistency of messaging for key communications about the trial and recruitment on all three sites. Core scripts were developed

· understanding how team performance differs – variations needed to be addressed through understanding the barriers and helping to overcome them or providing additional training

· being prepared to flex resources – users needed visits outside of office hours when they were working; services needed to be flexible, with evening visits and Saturday clinics

· recognising that services cannot be delivered to everyone early on (trials will have some limitations, roll-outs will depend on resources) – clear expectations needed to be set so as not to disappoint. For example, some practices that signed up did not get any technology for many months

· tracking assets, as deployed equipment will change in accordance with a person’s needs. With each installation involving several pieces of technology, it is key to record what is placed where and when it will need maintaining

· tracking utilisation and being prepared to address those who do not use the equipment – for WSD purposes, we needed to leave kit with those who did not use it to see if there were common characteristics of people who behave like this. We would put effort into retraining if that was an issue. In a commercial venture, you would remove kit from those not engaging with it. Evaluation adds complexity.

Underlying all three phases of the trial was strong programme and project management, with key performance indicators being reported at weekly conference calls and monthly programme meetings. Additional project management and administrative staff were involved; all of the sites had under-estimated how complex it would be to keep on top of the trial recruitment and processing.

Experience to date

In summary, the experience to date is as follows:

· Early results from the WSD trial are very promising – utilisation, productivity and user satisfaction can, however, change over time and it is important to recognise that. Two of the sites have mainstreamed telehealth and all have mainstreamed telecare.

· It is important to keep people focused on the end goal – for example, by giving people targets across teams or practices.

· Technology is only one element of success – maybe 10 per cent of the implementation difficulties were associated with technology. The rest were about introducing new processes.

· Organisational history, personal relationships and politics are important – these need to be dealt with and accounted for in plans. If organisations/individuals have a history of not getting on, you will have to change something in the mix, or ensure a focus on delivery through robust management.

· Formalise shared learning through networks and working across geographical areas (eg, WSDAN and more recent initiatives in the West Midlands and Yorks and Humber).

· Communications, listening and consistency of messages is key – if people feel you are not listening to their concerns, they will not do their best for you. If you treat one site/team differently from another, this will also cause resentment.

· Stakeholders need continued support – on challenging programmes, it can be difficult to maintain motivation. Management effort needs to be dedicated to keeping spirits high, even when things are going in the wrong direction.

· What you do on a small scale does not necessarily translate to a large scale – Cornwall had the most successful recruitment campaign, but also the least assistive technology experience. Because of this, they planned from scratch for an ambitious roll-out, whereas the other sites built on their prior experience and, in some cases, had to revise their approaches to cope with the RCT and scale requirements.

WSD programme outcomes will be available from spring 2011.

References

[1] Chaudhry SI, Mattera JA, Curtis JP, Spertus JA, Herrin J, Lin Z, Phillips CO, Hodshon BV, Cooper LS, Krumholz HM (2010). ‘Telemonitoring in patients with heart failure’. The New England Journal of Medicine. Available at:
http://www.nejm.org/doi/pdf/10.1056/NEJMoa1010029 (accessed on 7 December 2010).