Information Sheet for Community Matrons

Information Sheet for Community Matrons

1. Study title

A Demonstration of the Role and Effectiveness of the SAPHE system.

(The acronym SAPHE stands for Safe and Aware Pervasive Healthcare Environment)

2. Invitation

You are being invited to take part in a research study. Before you decide it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear about or if you would like more information.

3. Who is organising and funding the research?

The organisations involved in this research and their roles are shown in the table.

Organisation / Role
Imperial College London / Design and development of SAPHE technology, system integration, trial design and implementation
University of Dundee / Research into ways of showing data to Community Matrons
BT / Design and development of SAPHE technology, system integration, data collection, system installation
Philips / Design and development of SAPHE technology, system integration
Smart Solutions / Local liaison, interviewing participants

The research is funded by the Technology Strategy Board and Department of Health.

4.. Who has reviewed the study?

Liverpool Paediatric Research Ethics Committee
Bishop Goss Complex
Victoria Building
Rose Place
Liverpool L3 3AN

5. Contact for further information

Dr. Richard Curry, Tanaka Business School, Imperial College London.
Telephone: 01428 724692
E-mail:

6. What is the purpose of the study?

The purpose of the study is to try and identify ways in which we can make use of modern technology to help Community Matrons give the best care they can to their patients. High quality information from across several domains is at the heart of the provision of care. Currently the majority of this is gathered by visiting and contacting the patient and their informal carers. We have developed the SAPHE system which automatically collects information about the patient’s activity levels, sleep patterns, and measures their physiological parameters via weight scales, a blood pressure monitor, and a wearable e-AR sensor (one of the components of the SAPHE system). This information is displayed on a computer in a convenient location so you will be getting information about how well a particular patient is coping even when you aren’t scheduled to visit them.

7. What is involved in taking part in the trial?

If you agree to take part in the trial we will ask you to

a) Work with a member of the SAPHE team to identify two groups of patients from those in your care. The first are those about whom you feel that having the information that can be provided by the SAPHE system may lead to a change in care delivery and the second a comparison group with similar health and social care needs but who won’t be getting SAPHE equipment installed.

20 patients will be recruited to each group for the trial period – that is 40 in total. Since we hope to involve 5 Community Matrons then each Community Matron will be required to identify 4 patients for the intervention group and 4 for the comparison group.

Since we need 20 people on the trial you will actually have to identify 6 people from your cohort of patients (giving a total of 30) because there will undoubtedly be people who refuse when we ask them to take part.

You will be asked to record why you selected a particular patient on the Patient Selection and Recording Tool.

b) Designing a SAPHE system for a patient.

A SAPHE system for a patient is designed by selecting sensors from the list given in the appendix to this information sheet. You will work with a member of the SAPHE team to do this. The results will be recorded. Because we are still developing the system we don’t know exactly which pieces of information will be most helpful you or the best way to display it to you on the PC. So the SAPHE system we design together for a particular patient will err on the side of collecting too much data rather than too little. Researchers from the SAPHE project will be analysing the data collected from the devices installed in people’s houses. They will not be able to identify particular patients from the data as only the Community Matron will be able to link the data with a particular patient so privacy is assured. This data will include information such as the times at which you enter and leave rooms in the house, or the duration of your periods of sleep. Our goal is to provide information on how you are coping on a regular basis to the Community Matron that she can be more aware of your needs.

c) Visit patient and obtain informed consent

You will be required to visit the patients you’ve selected to form the intervention group in conjunction with a member of the SAPHE team to discuss the project with them and obtain their informed consent.

d) Pre-trial interview

Just before the trial starts you will be interviewed by a member of the SAPHE team to ascertain your views on what you think the trial will reveal and what benefit you think that having SAPHE installed in people’s homes will provide you.

d) Be involved in regular case conferences

The monthly case conference between the Community Matron and the SAPHE team is an opportunity to review how the provision of information provided by the SAPHE system has impacted on the activity of the Community Matron. There will be 5 case conferences during the project and the results will be recorded.

If you feel at any time that the SAPHE system is causing a particular patient stress then you should not wait until a case conference to report this but draw it to the attention of the SAPHE team immediately.

e) Provide feedback to designers of information display

The SAPHE information display is being designed by researchers from University of Dundee. At each case conference you will also be asked to comment on the design of the display.

8. How long will the project last?

Each patient will spend 6 months with SAPHE equipment in their home. However the start of the trial will be staggered so not all patients start at once because of the logistics of installing the equipment. Similarly the removal of equipment will be staggered. The project will therefore last a total of 7 months.

9. What will happen to the results of the research study?

The results from this study will be reported in scientific papers to be submitted to appropriate conferences or journals. In all publications the results will be written in such a way that no one can infer that the data corresponds to a particular patient or carer. This is a standard way of informing fellow researchers and service providers while respecting confidentiality.

The results will be reported to Liverpool PCT in a workshop after the end of the trial

Depending on the nature of the results, they may give rise to further research and the creation of new projects on the same field, which could involve the same or different researchers.

Appendix: Sensors available for use in the SAPHE trial.

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Information Sheet for Community Matrons v1.doc - 20/11/2008 19:37