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Help improve sepsis long-term outcomes

Tell us about your experiences as a sepsis survivor, or member of staff caring for those diagnosed with sepsis, to help improve experiences and outcomes.

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Open until

14 July 2023

About this project

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Information for participants

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Background

Patients who survive an admission to critical care from sepsis often have a challenging recovery trajectory in the months and years following hospital discharge. Survivors can experience a wide range of problems including psychological, cognitive and physical difficulties.

Due to these often complex issues, up to 60% of survivors will require an emergency hospital readmission in the year following initial discharge. This can have a significant impact on the individual, their family and the healthcare system.

About the project

Working with the Sepsis Research FEAT, this project seeks to hear about individual experiences of sepsis survivors and those who oversee their care. These contributions will help us to develop an intervention which can support patients and caregivers in a way that improves long-term outcomes.

You will be asked to complete a short survey which will focus on your personal experiences and how services could improve the support offered to patients. Some participants will also be invited to take part in an online interview to help identify potential solutions.

 

We'd like to hear from sepsis survivors and their caregivers: in-hospital, community and voluntary staff

Tell us about your experiences to help improve the long-term outcomes experienced by those diagnosed with sepsis

We want to understand

The experiences of sepsis survivorship across the entire patient journey

The types of potential interventions which could be developed and implemented

What the barriers and facilitators are for providing better care

Step by step

Register
Create your Thiscovery account and verify your email address
Give consent
Read the information for participants and agree to take part
Complete survey
Take part in this short survey

Information for participants

Key things to know

  • This project will look at the experiences of sepsis patients, caregivers/family members and the staff caring for them. Its aim is to improve the journey of recovery for those surviving sepsis.
  • This is an online study which will involve taking part in a short survey.
  • A small number of participants who complete the survey will also be invited to take part in an online interview with a member of the research team.
  • Participation in this project is entirely voluntary. If at any time you decide you do not want to take part, that’s not a problem. Please let the project team know by getting in touch.
  • Taking part or withdrawing from the project will not affect your care in any way.
  • Your confidentiality will be maintained at all times.
  • This webpage explains the project in more detail.

About this project

Survivors of sepsis often face multiple challenges following discharge home from hospital. These challenges can include physical, emotional and social problems. Working alongside Sepsis Research FEAT, the aim of this project is to improve the journey for those surviving sepsis.

Specifically, we will work with patients, family members and staff involved in sepsis care to understand their experiences of sepsis survivorship. In partnership, we will delineate potential interventions which could be developed, alongside any barriers and facilitators to providing better care.

What will happen and how will you be involved?

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. Please feel free to talk to others about the study if you wish or ask us about anything that’s unclear.

If you agree to take part, you will be asked to firstly register with the Thiscovery platform which takes approximately 2-3 minutes. The next step will then be to complete an eligibility screening survey, which will take approximately 2 minutes. If eligible for participation, you will then be asked to provide consent electronically, which will take approximately five minutes.

All participants will be asked to complete a survey. The questions within the survey will be dependent on your role in the research (patient, family member or clinician). The survey will ask questions about sepsis recovery and potential improvements to care. It will take between 15-20 minutes to complete.

A small number of participants who complete the survey will also be invited to take part in an interview with a member of the research team (Jo McPeake). The aim of these interviews is to explore specific issues which were encountered, with the aim of identifying potential solutions to improve experiences and outcomes. Each interview will take approximately 45 minutes and will be audio recorded.

This project is hosted by an online platform known as Thiscovery. If you would like to take part, you will need to register on the secure Thiscovery platform, which has been developed by The Healthcare Improvement Studies Institute (THIS) Institute at the University of Cambridge and facilitates consultation projects like this one. The key features of the platform are set out below:

What is it? – Thiscovery is a secure online platform developed THIS Institute. It facilitates members of the public, including people who access healthcare as patients, carers and service users, healthcare professionals, and policy makers, to engage in research through the platform.

How is it accessed? – Thiscovery can be accessed on PCs, phones, tablets and other devices using the following link: www.thiscovery.org. To use Thiscovery, potential participants first register to use the platform by providing the following details: name, email address, and country.

What are the benefits of registering? – By registering for an account, participants can review the projects and tasks they’ve completed on the platform and receive information and updates on Thiscovery based research.

Within Thiscovery you will be asked to complete an initial set of eligibility questions, to read a consent statement and provide consent electronically. Following consent, you will be emailed a link to the project information on the Thiscovery website, and a copy of your completed consent form for your records. Once you have given your consent, you will be able to access survey materials through the Thiscovery platform.

Are there any age or other restrictions that may prevent me from participating?

This project is focussed on the adult population. As such, we are interested in hearing from people older than 18 years of age. We will not be interviewing anyone under 18 years of age.

We also understand that many patients do not survive a diagnosis of sepsis. This is an important and a crucial area for future research development. However, the focus of this particular project is on how we improve the experience of those who survive.

What are the benefits of this project?

There will be no direct benefit to you from taking part in this project; however, your contribution will improve our knowledge of sepsis survivorship, so that others may benefit in the future.

Are there any risks?

We recognise the potential sensitivity of thinking about recovery from sepsis, as well as the illness itself. Specifically, there is a risk of emotional upset for those involved. Please be assured that we can stop the interview at any time, you can skip questions within the survey and you can withdraw from the study at any time.

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

If you change your mind about taking part in the project, you can withdraw at any time without giving a reason. However, it may not be possible to remove research data that has already been submitted through your Thiscovery account.

To withdraw please email jm2565@medschl.cam.ac.uk.

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 de-register by emailing help@thiscovery.org.

For more information on how to manage your Thiscovery account, please see the privacy policy.

How will your data be used?

How will we use information about you?

The University of Cambridge are the sponsors for this project based in the United Kingdom. We will be using information from you in order to carry out this project, so we are the data controller for this project. 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 research project:

  • Your consent form.
  • Key demographics which you may provide, including age, gender, postcode, type and nature of hospital admission, profession and other responses which might be provided via the survey.
  • Your name and contact details to arrange a potential interview and to share the project results if you request.
  • Audio recordings and transcripts from interviews.

People will use this information to do the research or to check your records to make sure that the research is being done properly. Only the direct recruiting team, data management and authorised audit systems will have access to your personal information.

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 information for analysis and all reports will be robustly anonymised. Your data will have a code number instead. 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. If you agree to take part in this project, the information we gather may be shared anonymously with academic and commercial researchers external to the project in and outside the UK who are working with Thiscovery. This is so that our research can be used to support other likeminded researchers. These partners will hold a data agreement with THIS Institute and will be bound by the same ethical requirements.

Once we have finished the project, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the project. Personal identifiable information will be deleted 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 project at any time, without giving a reason, but we will keep research data that you have already submitted. Please read the earlier section on withdrawing from the project for full details.

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.

Where can you find out more about how your information is used?

You can find more about how we use your information via the following:

 

What will happen to the results of the project?

  • The aim of this study is to improve the outcomes of patients and families who have experienced sepsis. It will inform how we improve and deliver care.
  • We will inform all participants, via email of the results. The results will also be presented in academic journals and at academic conferences. We will also publish the findings on the Sepsis Research FEAT website.
  • We will maintain your confidentiality at all times, and your name will not appear in any outputs from the study.

Who has reviewed, organised and funded the project?

  • This project is led by Joanne McPeake, a post-doctoral research fellow with the Healthcare Improvement Studies Institute.
  • This project has received ethics approval from Cambridge Psychology Research Ethics Committee and the reference number is PRE.2023.018.
  • This project is funded by The Healthcare Improvement Studies Institute (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).

Get in touch

For questions or concerns about anything to do with the project, please email the research team at help@thiscovery.org. For technical problems or questions about the platform, please contact the Thiscovery team using the chat or email at help@thiscovery.org.

For any complaints or concerns

Contact the University of Cambridge Research Governance office: Tel: 01223 769291 Email: SchoolSec@medschl.cam.ac.uk.

If you wish to raise a complaint on how we have handled your information, you should contact the research team at help@thiscovery.org.

If you are not happy after that, you can contact the Data Protection Officer at dpo@admin@cam.ac.uk.

If you are not satisfied with their response or believe your data is being processed in a way that is not lawful, you can complain to the Information Commissioners Office (ICO) at www.ico.org.uk or telephone 0303 123 1113.

Researchers

This project is led by

Dr Jo McPeake, THIS Institute
Dr Jo McPeake, THIS Institute
jm2565@medschl.cam.ac.uk
Dr Bronwen Connolly, Queen's University Belfast
Dr Bronwen Connolly, Queen's University Belfast
B.Connolly@qub.ac.uk
Dr Nazir Lone, University of Edinburgh
Dr Nazir Lone, University of Edinburgh
nazir.lone@ed.ac.uk
Prof Charlotte Summers, University of Cambridge
Prof Charlotte Summers, University of Cambridge
cs493@cam.ac.uk