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Sexual health care in the NHS — Patient Information Sheet

This is for patient participants. There is a different information sheet for NHS staff.

Audio version

You can listen to Dr Ulla McKnight reading version 1.4 of the patient information sheet dated 29 September 2020:

If you have any questions you can ask us on 07867138015 or email u.mcknight@sussex.ac.uk or contact one of the organisations below.

If you are happy, you can .

Written version

This is version 1.6 of the information sheet dated 16th November 2020.

Title of Research

Health inequalities & tackling antimicrobial resistance in sexual health: A study of antibiotic treatment and experiences of bacterial infection

Name of Researchers

Dr Catherine Will & Dr Ulla McKnight, University of Sussex.

Summary of the study

You are invited to take part in a research study. The study is sponsored by the University of Sussex and funded by the Wellcome Trust.

The research aims to better understand how patients and health care practitioners’ talk about antibiotics and treat bacterial infections in different clinics and how both groups feel about care, medicines and infections. This is important because health care is facing more infections that are resistant to the antibiotics we have at the moment. The researchers will use the information they collect to help health care practitioners meet their patients’ needs.

You are invited to be interviewed virtually by a researcher. The researcher would like to have a conversation with you about your experiences in the clinic, your feelings about medical care, infections and treatment. The interviews will be used to help the researchers understand these issues from a patient’s point of view. If you agree to be interviewed, you will be given a voucher as compensation for your time.

In this research study we will use information from you. We will only use information that we need for the research study. If you agree to an interview, we will let very few people know your name, and only if they really need it for this study. Everyone involved in this study will keep your data safe and secure. We will also follow all privacy rules. At the end of the study we will save some of the data in case we need to check it. We will make sure no-one can work out who you are from the reports we write. The information pack tells you more about this.

Why are we doing the study?

Some of the antibiotics that are currently used to tackle infections are not working very well. So, healthcare providers and policy makers need to think carefully about how antibiotics are prescribed to patients. This study aims to help health care practitioners and policy makers better understand how to care for, prescribe and talk about antibiotics and bacterial infections to different patients.

We think the best way to do this is to talk to patients and their health care practitioners about their experiences, thoughts and feelings. That is why we are interviewing patients and practitioners. We also think it is important to find out how bacterial infections and antibiotics are talked about and treated in this clinic. This information will help us better understand how clinics manage these issues – and what difficulties they face in practice.

All research in the NHS is reviewed by an independent group of people, called a Research Ethics Committee, which is there to protect your safety, rights, wellbeing and dignity. This project has been reviewed and was given a favourable review by the London - Brighton and Sussex NHS Research Ethics Committee, and the University of Sussex Sponsorship Sub-Committee (SSC), as well as by experts in social science, a lay review panel and patient representatives. We cannot promise that this study will help you, but it might help clinics and policy makers better understand how they can improve care.

Why am I being asked to take part?

You have been invited to take part in this study because you have an appointment at one of the clinics that is involved with this project. You don’t have to agree. It is up to you to decide whether or not you wish to take part. In this information pack we will describe what would happen if you do. We are ready to answer any questions you might have before you decide.

What will I need to do if I take part?

You are invited to be interviewed virtually by the researcher. The researcher would like to talk with patients about their experiences of sexual health and health care. The interview will last for about one hour and will be similar to a conversation between you and the researcher. During the interview the researcher may ask questions about your experiences in the clinic, your life and your background. The researcher would like to record the interview – but she can take notes if you would prefer. Any recording will take place using a password protected device belonging to the researcher (not the platform provider) and stored securely. We would like to publish anonymised quotations from interviews.

In exceptional circumstances and in line with Trust policy we will be required to pass any concerns onto safeguarding staff at the clinic if we are worried that your safety or the safety of others seems at risk.

If you are happy to be interviewed, you will be asked to confirm that you have listened to or read all the information in the audio recording. You can phone or email the researcher so that she can answer any questions you might have. After that you will be asked to pick a time that works for you. We will send a text or email with a link to the interview which will take place on a digital platform (either Microsoft Teams, University of Sussex Zoom or Skype for Business). We will also send you a reminder shortly before the interview. The researcher will ask you if you consent to take part in the research before the interview starts and will of course be happy to answer any additional questions you might have.

More information about taking part

Compensation

If you agree to be interviewed, you will be compensated for your time with a voucher worth £20 per interview. We will send you the voucher via text or email after the interview.

Possible disadvantages

It is possible that talking about issues relating to infections could be upsetting and could cause some embarrassment or raise questions. You will be able to talk to a trained member of staff if you become upset or have any questions that the researcher is not able to answer. The researcher will give you information about support groups if you wish. If you have any complaints about the study contact us or Dr Antony Walsh, the Research Governance Officer at the University of Sussex. The University has insurance in place to cover its legal liabilities in respect of this study. You can also complain formally through the NHS Patient Advice and Liaison Service (PALS) (see contacts below).

What are your choices about how your information is used?

You can stop being part of the study at any time up to two months after you have taken part, without giving a reason. If so we will destroy transcripts of interviews with you, but we will need to keep a record of your name, participation and withdrawal. We need to manage your records in specific ways for the research to be reliable. This means we are not 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 out more about how we use your information from the Health Research Authority at https://www.hra.nhs.uk/information-about-patients/ or the leaflet available from https://www.hra.nhs.uk/patientdataandresearch.

You can also ask one of the research team, or contact the University of Sussex Data Protection Officer by sending an email to dpo@sussex.ac.uk. More information about how research data is stored and used is available from the University here: https://www.sussex.ac.uk/about/website/privacy-and-cookies/privacy.

How we use information about you?

We will need to use information from you for this research project.

If you agree to be interviewed, this information will include your name. People will use this information to do the research or to check your records to make sure that the research is being done properly.

People who do not need to know who you are will not be able to see your name. Your data will have a code number instead.

We will keep all information about you safe and secure.

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 no-one can work out that you took part in the study.

The information collected for this study will be used to write academic pieces including conference papers and articles, as well as reports and training material for clinical staff and policy makers. All of these will be made available on the project’s website where you can sign up for direct updates and news of events. We will also post information about the project on Facebook, Instagram and Twitter (please see the landing page for details https://www.marginalisationandthemicrobe.org).

How to contact us?

If you have any questions or concerns about any aspect of this study you could talk to the researchers who work on the project – Ulla McKnight or Catherine Will – or to Professor Jane Anderson, Dr Achyuta Nori, Dr Suneeta Soni, Dr Susanna Currie, Dr Vendela McNamara and Dr Chantal Oxenham at the different Trusts who are co-investigators on the research. If you would like to talk to someone outside the project you could contact Antony Walsh, the Research Governance Officer at the University of Sussex. You will also be able to contact the Patient Advice and Liaison Service (PALS) (see contact details below).

Dr Ulla McKnight and Dr Catherine Will
Freeman Building, School of Law, Politics and Sociology, University of Sussex, Falmer, Brighton BN19QE
Telephone: 07867138015
u.mcknight@sussex.ac.uk or c.will@sussex.ac.uk

Dr Antony Walsh
Falmer House, University of Sussex, Falmer, Brighton, BN1 9QF
researchsponsorship@sussex.ac.uk

Patient Advice and Liaison Service (PALS) Brighton
Telephone:01273 696955 extension 64511 or 64973
bsuh.pals@nhs.net

Patient Advice and Liaison Service (PALS) Guy’s and St Thomas’
Telephone: 020 7188 8801
pals@gstt.nhs.uk

Patient Advice and Liaison Service (PALS) Barts Health Hospitals
Telephone: 0203 465 5919
SBHpals.bartshealth@nhs.net

Patient Advice and Liaison Service (PALS) Homerton University Hospital NHS Foundation Trust
Telephone: 020 8510 7315
pals@homerton.nhs.uk

Patient Advice and Liaison Service (PALS) North Cumbria Integrated Care NHS Foundation Trust
Telephone: 0800 633 5547
pals@ncic.nhs.uk

Patient Advice and Liaison Service (PALS) Midlands Partnership NHS Foundation Trust:
Telephone: [0800 783 2865]
palsandexperience@mpft.nhs.uk

Patient Advice and Liaison Service (PALS) London North West University Healthcare NHS Trust:
Telephone: [020 8869 5118]
LNWH-tr.PALS@nhs.net

You can find out more about medical research from The Health Research Authority
https://www.hra.nhs.uk/information-about-patients or https://www.hra.nhs.uk/patientdataandresearch

More information about the privacy and security on these platforms can be found here:

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