Information sheet for patients
Can you tell us what you think about the PEACS service?
King’s Health Partners (KHP) Mind & Body Programme is delivering a new service, called PEACS (Pain: Equality of Care and Support in the Community), for people living with chronic pain. They have asked the Tavistock Institute to carry out an evaluation of the service. The Tavistock Institute (www.tavinstitute.org) is an independent research institute that does a lot of research around health and community services.
The purpose of the evaluation is to explore the process of delivering this service and understand how it has affected people and the health services they use.
To understand the difference the service has made for you, we are asking you for the following three things:
- To allow your GP to share anonymised information about how often you have been to the GP, A&E or other health care service.
- To fill out an online questionnaire about your thoughts on the PEACS service and if it helped you, at the end of your engagement with the service
- To agree to speak to one of the evaluation team about your opinions and experiences of the service. This will be through an individual conversation with you and/or part of a group discussion at the end of workshops run by the PEACS service.
For 1 and 2: All information from the online questionnaire and the data will be anonymised before it is shared with the evaluation team. We will not share it with any third parties. No person will be identifiable in the reports we write for KHP, the health service or anyone else. For the health care appointment data (1) we will ask for that information now as well as 12 months after the end of your engagement with the PEACS service.
For 3: Anything you say is strictly confidential. We will use direct quotes from you, if possible, but no person will be identifiable. The only exception to confidentiality is if there are any concerns that either you or someone else is in serious danger. If possible, we will tell you first but, in this case, we may need to talk to KHP’s safeguarding team.
You can drop out of the evaluation at any time and your details will not be shared with anyone else.
We really hope that you will be happy to take part in this evaluation so we can understand if the service makes a difference for people and whether anything needs to improve.
If you would like more information about this evaluation, you can contact Anna Sophie Hahne or someone else at the Tavistock Institute email at a.hahne@tavinstitute.org / dpo@tavinstitute.org.
More Information
What is the online questionnaire about?
The questionnaire contains questions about your experience of the PEACS service, how well supported you feel, and if the service has helped you with several things such as feeling more involved in your community/ies.
What is the interview about?
The questions are not about assessing you, but about the impact that the service has had on everyone involved. The questions will be explained to you before the start of the interview. You do not have to answer or talk about anything you do not want to. With your permission, we will audio record your interviews using an encrypted recorder. We will then transcribe them, removing any identifiable data in the process, before uploading the transcript to a secure server and destroying the audio recording.
Where will the interviews take place?
The interviews are likely to take place over the telephone, or online if you prefer, where we can talk confidentially, at a time that suits you. If you would rather speak to us face-to-face we can also arrange that. We also hope to visit workshops that you may attend and hear different people’s views.
How long will the interview take?
This depends on how much you would like to say, but we expect interviews to take around 30 minutes to an hour.
Will I be definitely contacted to take part in an interview?
We will send everyone who agrees the link to the online questionnaire, however we will only ask a small number of participants to be interviewed by one of the evaluation team. If you have any access issues, please let us know and we will try to accommodate them.
What will you be doing with the information I provide you with?
We will analyse the information you provide us to see if taking part in the service has made any difference to how you are feeling and the type of support you are receiving. We will delete your information within 1 year of the evaluation ending.
Will what I say be reported back to the local services or support providers?
No. All of the information you provide us with will be treated in confidence by the evaluation team and not passed on to anyone else. For the interviews, the only exception is if you say something that makes us worried that someone may be in danger or is being harmed. We will then have to follow local safeguarding procedures.
How will we use information about you?
We will need to use information from you for this evaluation, but we will only use it for the purpose of this evaluation. This information will include your contact details to be able to send you the online questionnaire or to arrange an interview with you. We will keep this information separate from any other information about you. People who do not need to know who you are will not be able to see your contact details. Your data will have a code number instead. We will write our reports in a way that no-one can work out the identities of anyone taking part in the evaluation.
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 delete all data by December 2025.
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.
- You can see the information that we hold on you and we will be able to change or delete the information you provided via the online questionnaire (2) or the individual conversation with one of the evaluation team members (3) until June 2023. We won’t be able to change or delete information about your GP, A&E or other health care service visits.
Where can you find out more about how your information is used?
You can find out more about how we use your information:
- By asking one of the evaluation team members
- by sending an email tohahne@tavinstitute.org or dpo@tavinstitute.org
For the general privacy policy of the Tavistock institute please see here.
Do I have to take part?
You can decide whether you want to take part or not. It is totally your choice and has no impact on the services being provided to you.
What if I have a complaint about the research or how the interview has been conducted?
If you are unhappy with the research or with the conduct of the researcher, please report these to the evaluation project manager Anna Sophie Hahne via a.hahne@tavinstitute.org. If you want to make an anonymous complaint, please contact Leah Ashton-Hurst via l.ashtonhurst@tavinstitute.org according to the Research Integrity Standards and Procedures.
If you would rather not speak to someone at the Tavistock Institute, you can contact Misha Gardner at Misha.Gardner@slam.nhs.uk. Misha is part of the team responsible for commissioning the research and will be able to take up any issues that you have with the relevant parties.
Thank you for taking the time to consider participating.