Demo

Share your views on the NICE recommendations for improving end-of-life care and treatment

Open until

31 July 2022

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 NICE guidance on end-of-life treatment and care for adults. The study will try to improve the quality of end-of-life care planning by learning from the views and experiences of a wide range of people.

We would like to invite you to rate the importance of several recommendations relating to planning for end-of-life care and treatment. The task will take place over up to four stages; each stage should take no more than 10 to 15 minutes to complete.

How you can be involved

We are keen to hear from you if you are:

  • an individual who represents or works for an organisation with an interest in end-of-life care or represents a group who may be at risk of unequal access to end-of-life care
  • an individual who has started planning for end-of-life care and treatment for themselves or someone important to them
  • a health or social care staff who plans or delivers end-of-life care and treatment
  • an individual with oversight of implementation of end-of-life care processes, such as someone from a policymaking or regulatory organisation

Your views will provide insight into how to optimise approaches to improve implementation of NICE guidelines in end-of-life care.

We want to understand

Key influences on planning and delivery of treatment and care towards the end of life


What resources and tools currently exist to support these processes


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

What to do now

Register your Thiscovery account
It only takes a couple of minutes. You’ll need it for the subsequent task.
Consent to the project
Read the information for participants and consent form.
Participate in the online exercise
It should take you 10 to 15 minutes for each stage.

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.
  • 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. Our study aim is to create evidence-based recommendations to improve implementation of this guidance.
  • If you agree to take part, you will be asked to complete up to four stages of an online consensus-building exercise via an online platform. In the first stage, you will be asked to rate the importance of a list of recommendations to improve the implementation of NICE guidance, related to planning for end-of-life care and treatment. A few weeks later, you will be shown how your scores compare to those of other participants, and asked to revise or keep your original scores in light of this information. Depending on how far people agree or disagree in the earlier stages, you may be asked to prioritise the importance of items in the third and fourth stage.
  • 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.
  • We will maintain your confidentiality at all times, and your name won’t appear in any outputs from the study.

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 the planning and coordination of end-of-life care 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 various groups of people with an interest in end-of-life care 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 are inviting you to participate in an online exercise to give us your thoughts on how to improve the uptake of NICE guidance to improve end-of-life care.

Building on analysis of data collected from other key people with an interest in in end-of-life care, we will produce some draft recommendations. In the online exercise, 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 four 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 influence what we include in the guidance. 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 of thinking about end-of-life care and new care pathways. For the particular exercise, we believe that there is little risk to participants associated with rating of a list of recommendations.

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 after completing the 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 research, 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.

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

  • Your consent form for the task;
  • Your preferences for the recommendations.

Only the direct recruiting team, data management and authorised audit systems will have access to your personal information.  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 participants are not identifiable. 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 re-contacted.

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.