Demo

Share your experience of care for heart failure during a pandemic

Determining perspectives of patients and healthcare providers on managing patients with heart failure during a pandemic.

Stage

Task 1 of 2

Task closes

15 February 2021

About this study
Information for participants

We aim to understand


The role that the law plays in shaping the process of diagnosis
Your views on the standards of care that apply, or should apply, to the forming, communicating, and recording of a diagnosis
Your views on the potential application of Montgomery to communicating diagnostic uncertainty

About the project

Heart failure is a condition in which the heart does not work effectively to meet the needs of the body or handle the amount of blood volume in the body. It can be caused by a number of conditions, and affects nearly a million people in the UK.

People with heart failure are often short of breath, fatigued and struggle to carry on usual activities. They need support from primary care and specialist services in secondary care to help them manage symptoms, receive appropriate treatment, and improve their quality of life.

In this stage of the study we are interested in how the pandemic has affected care for people with all types of heart failure.

Share your views

We would like to get the perspectives of patients, carers, and healthcare providers. We are interested in how care has changed, what has worked well or not, and what changes should be continued after the pandemic or during another similar situation.

Earlier in this study, researchers identified and followed a group of patients for a year to better understand their heart failure, other conditions, needs for support, experience of treatment, and if they have problems requiring hospital care.

In this stage, the research team seeks to understand the perspectives of patients and staff delivering care on strategies for managing heart failure during the COVID-19 pandemic.

We'd like to hear from patients and healthcare providers in primary care and specialist or secondary services
Share your experience of heart failure care and shape future healthcare practice
Coming soon...

How you can be involved

Task 1 (10-20 mins)

You will be shown some key findings from our research and asked to rate the level of importance of specific items.

Closes 15 February 2021

Task 2 (10-20 mins)

You will see the ratings of others alongside your own and be asked to consider your response in light of them.

Opens early 2021

About this method

This two-step process of rating importance follows an established research method called eDelphi and and is often used in situations when limited evidence exists.

Information for participants

About this study

We would like to invite you to take part in a research study that aims to seek agreement from various groups of people (healthcare service users, healthcare service providers) on:

  • how to manage areas of uncertainty that have been identified during the COVID-19 pandemic
  • establish consensus on the use of different approaches to providing healthcare that have emerged in the wake of COVID-19 (e.g. telephone and video consultations).

 

At the end of the project we will produce guidance on healthcare service provision during the COVID-19 pandemic that will be applicable for further waves of COVID-19 or future pandemics.

This information will help you decide whether to take part. Please discuss it with your family or carers if you wish. If you have any questions, please contact us using the details provided. Your participation is entirely voluntary.

What is the purpose of the study?

  • The Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), commonly referred to as COVID-19, has resulted in a number of societal and health care provision changes.
  • We have conducted interviews with healthcare service users and healthcare service providers and identified areas of uncertainty in the response to the COVID-19 pandemic such as responsibility for providing information on self-protection (shielding) and how best to support healthcare service users when face to face healthcare services are disrupted.
  • We have used information gathered from these interviews to create a series of questions and statements around which we want to gauge your support or agreement.

Why have I been chosen?

You have identified yourself as a healthcare provider who supports people with heart failure or as a patient with heart failure or a carer for someone with heart failure, and participated in the first round. You have been sent a link or invitation that has led you to the second round of this project.

Do I have to take part?

No. It is up to you to decide whether or not to take part. If you decide to take part and then change your mind you may withdraw at any time without giving a reason. Withdrawal is simple and you can de-register or withdraw your data from Thiscovery at any point by emailing enquiries@thisinstitute.cam.ac.uk.

What will I need to do if I take part?

This is Task 2 of the project, and we have invited you due to your participation in Task 1. In Task 2, we will ask you to consider the questions where consensus was not reached in Task 1 so that we can collect your responses to the revised questions/statement. This process is commonly referred to as a delphi study and is often used in situations when limited evidence exists.

Participation will take 10 minutes in this round of questions and you may end the process at any time without giving a reason.

What are the benefits of taking part in this study?

There is no guarantee that you will benefit personally from taking part. Possible long term benefits of the research are that it will help to improve how we manage patients with other healthcare needs in future pandemics.

Are there any risks?

We do not believe you will be harmed in any way by this research because it only involves giving your opinion or level of support for a series of questions or statements. This study does not involve testing a drug or medical procedure.

How will the findings be used?

The results will be used to produce guidance for healthcare service provision during the COVID-19 pandemic that will be applicable for further waves of COVID-19 or future pandemics. The research will be reported in a way that is confidential and your participation will not be identified in any way. The results may be published on University of Cambridge websites and in healthcare journals, presented at conferences and to patient support groups.  If you would like to be kept informed of the results please tell the researcher.

What will happen to the information I provide?

The University of Cambridge is the sponsor for this study. 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 name and contact details so you can be contacted for Stage 2 of this study;
  • Your consent form for each task that you choose to take part in;
  • Your survey answers (Task 1 and Task 2);

 

We will keep all information about you safe and secure.  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. 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 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.

You can find more about how we use your information at the links below:

School of Clinical Medicine, Privacy Notice – How we use your research data

Thiscovery Privacy Policy

Important details

  • This study is organised by an independent and highly experienced team from THIS Institute.
  • This study 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).
  • This research is led by Professor Christi Deaton, Department of Public Health & Primary Care, University of Cambridge.
  • This study has been reviewed by the Council of the School of the Biological Sciences, Human Biology Research Ethics Committee.

Get in touch

For questions or concerns about anything to do with the study

Professor Christi Deaton
Professor Christi Deaton
christideatonpa@medschl.cam.ac.uk

For any complaints or concerns

If you wish to speak to somebody who is independent you can 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 can contact:

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