Demo

Share your views on improving planning for end-of-life care in the UK

Improving implementation of National Institute for Health and Care Excellence (NICE) recommendations on end-of-life care

Open until

28 February 2022

About this project
Information for participants

About this project

Developed in collaboration with the National Institute for Health and Care Excellence (NICE), this project seeks to develop evidence-based recommendations for improving implementation of its guidance on end-of-life care for adults.

We would like to invite you to complete a survey to share your perspective on what influences various aspects of end-of-life care, including planning of, conversations about, and coordination of end-of-life care in the UK. The survey should take no more than 15 minutes.

Have you recently made or helped other people to make plans about care and treatment towards the end of their lives?

Your comments will provide invaluable insights into end-of-life care planning processes. We are keen to hear from you!

We want to understand

Key influences on quality of end-of-life care


What resources and tools currently exist


How we can improve implementation of end-of-life care guidance

How you might be involved

Short survey
Give your opinions and share your experiences of planning of end-of-life care
Online interview
Potentially take part in an interview to explore your thoughts in more detail
Review findings
Researchers will seek your feedback on the recommendations generated

Is online not your thing?

If you do not have easy access to the internet or don’t feel comfortable using this website, we still want to hear from you.

Please call us on 01223 765462 or email the project team at planningeolc@thisinstitute.cam.ac.uk to arrange your interview.

Information for participants

Key things to know

  • We are exploring what influences planning for treatment and care towards the end of life by collecting the views and experiences of people from various groups in the UK.
  • The National Institute for Health and Care Excellence (NICE) seeks to improve outcomes for people using the NHS and other public health and social care services by providing national guidance and advice. NICE has put out guidance for end of life care. A study aim is to create evidence-based recommendations to improve implementation of this guidance.
  • You can take part in three tasks. Task 1 is a short survey about your views on end-of-life care planning. Task 2 is an interview with a researcher, covering the same issues in more detail. Task 3 involves looking at some key findings from our research in an online exercise. They will happen over several weeks, and you will be notified when each task is available.
  • Participation in this study is entirely voluntary. If at any time you decide you do not want to take part, that’s not a problem – just let us know.
  • If you take part in an interview, we will ask your consent to record it.

About this study

Developed in collaboration with the National Institute for Health and Care Excellence (NICE), the project seeks to address a known shortcoming in healthcare provision in the UK: that many people nearing the end of their lives are not effectively consulted on their preferences for treatment and care. This can result in less personalised care and, ultimately, poorer experiences for individuals, their families and carers.

We aim to understand what influences end-of life care provision by collecting the views and experiences of various stakeholders. The aim is to create evidence-based recommendations to improve uptake on NICE guidance for end-of-life care.

What will happen and how will you be involved?

This study is highly participatory, with involvement from people who may be approaching end of life, the people important to them, health and social care staff and other relevant groups at every stage. We’d like to invite you to take part in our research study.

Joining the study is entirely up to you. Before you decide we would like you to understand why the research is being done and what it involves. Reading this information will take about 10 minutes. Please feel free to talk to others about the study if you wish, or ask us about anything that’s unclear.

We have three possible tasks for you, but you don’t have to do all three.

1. An online survey

The survey will ask a few simple questions about you, and invite you to give us your opinions and share your experiences of end-of-life care. At the end, you’ll be able to opt-in or opt-out of receiving invitations to take part in Tasks 2 and 3.

2. An in-depth interview, online or telephone (about 30–45 minutes)

We may invite you to take part in an interview with a researcher who will ask some further questions, building on the survey, and guide the discussion. We are interested in your experiences and thoughts on what is important to consider in the planning and provision of end-of-life care.

You will have a choice of an online interview or an interview on the phone. With your consent, the interview will be audio-recorded.

3. An online exercise to give us your thoughts on how to improve the usage of the NICE guidance to improve end-of-life care

After analysis of the interviews and a data collection involving other key people with an interest in end-of-life care, we will produce some draft recommendations. In Task 3, we will ask you to review the recommendations and vote to indicate your preferences for what they should include. This will take place over up to three stages.

What are the benefits of this study?

Taking part in this study will help to guide good practice in end-of-life care processes. Your participation gives you the opportunity to provide your views and experiences and influence what we include in the recommendations. There is no direct benefit to you but your contribution will improve our knowledge of what matters in end-of-life care in the future and will benefit others.

Are there any risks?

We recognise the potential sensitivity for some participants in talking about personal experiences of end-of-life care and thinking about new care pathways.

The interviewers are experienced and used to watching out for signs of distress, and will try their best to conduct the interviews in an appropriate and sensitive manner. This may include pausing or stopping the interview, and helping you to access appropriate support and follow-up if necessary. If you find that the interview triggers distressing feelings for you, you can find resources for support here. You are also free to withdraw from the study at any time without giving reason.

In the unlikely event that you disclose information during an interview with an interviewer that suggests care that may not be safe, or that you may be at risk of harm to yourself or others, then the project team will take appropriate action. If appropriate, this may include contacting relevant bodies or authorities. Wherever possible this would be done with your permission and/or that of the any other individual(s) involved. However, if this is not possible, confidentiality will be breached if necessary to avoid the possibility of harm.

What do I do if I want to withdraw from the study?

If you change your mind about taking part in the project you can withdraw at any time. If you want to withdraw from the study during the interview, please tell the interviewer (you do not have to give a reason). If you want to withdraw from the study after completing the survey, interview or consensus-building exercise, please email planningeolc@thisinstitute.cam.ac.uk. Please note it will not be possible to remove data that have already been anonymised.

Personal data used to register for Thiscovery will be securely stored on Thiscovery, as set out in the Thiscovery terms and conditions. If you decide at any point after registering with Thiscovery that you no longer want your contact details kept by Thiscovery, you can withdraw your information by emailing enquiries@thisinstitute.cam.ac.uk.

How will we use information about you?

The University of Cambridge are the sponsors for this study based in the United Kingdom. We will be using information from you to carry out this study, so we are the data controller for this study.  This means that we are responsible for looking after your information and using it properly. We will keep identifiable information about you for as long as it is required. This will be stored securely by THIS Institute, University of Cambridge. Some of the information that you provide might be considered as health data or other data that would be classed as Special Category data under Article 9 of the General Data Protection Regulation (GDPR). As part of the consent process for this project we therefore need to seek your consent for the processing of this data.

We will need to use the following information from you for this study:

  • Your consent form for each task that you choose to take part in;
  • Your survey answers (Task 1);
  • Your name and contact details to arrange an interview and your audio recording and transcript from your interview (Task 2);
  • Your audio recording and transcript from your interview (Task 2);
  • Your preferences for the recommendations (Task 3).

We will audio record interviews which will be transcribed and anonymised by a third party who is subject to the University’s data protection processes. All transcripts will be fully anonymised to remove any information that could identify people or places. The anonymised transcripts will be stored on the University of Cambridge secure server. We will keep all information about you safe and secure. For more information about our secure data area please see the secure data hosting service. In the future, this data may be shared anonymously with other academic researchers working at, or in partnership with, THIS Institute. These partners will hold a data agreement with THIS Institute and will be bound by the same ethical requirements.

Only the direct recruiting team, data management and authorised audit systems will have access to your personal information.  All transcripts for analysis and all reports will be anonymised. Your data will have a code number instead. People will use this information to do the research or to check your records to make sure that the research is being done properly.

If you agree to take part in this study, the information we gather may be shared anonymously with academic and commercial researchers external to the study in and outside the UK. This is so that our research can be used to support other like-minded researchers.

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that ensures that no-one can work out that you took part in the study. Any links to the personal data held in Thiscovery and any unique user IDs will be destroyed 24 months after the end of the project. This is to allow us to communicate any results from the project to those participants who want to be kept informed and agree to be recontacted.

What are your choices about how your information is used?

You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.

Important details

This study is organised by an independent and highly experienced team from the University of Cambridge.

This study is funded by The Healthcare Improvement Studies (THIS) Institute – an independent research institute co-created by the University of Cambridge and The Health Foundation (an independent charity committed to bringing about better health and health care for people in the UK).

This research will be led by Professor Graham Martin, Director of Research, THIS Institute, University of Cambridge.

This study has received ethics approval from University of Cambridge Psychology Research Ethics Committee.

Who should I contact with questions about the study?

Please email the project team at planningeolc@thisinstitute.cam.ac.uk