We are inviting you to take part in an interview to give us your views about the roll-out and implementation of new care pathways for chronic subdural haematoma (cSDH) in the east of England.

• Chronic subdural haematoma (cSDH) is a common neurosurgical condition that typically affects older patients with other health conditions. Many patients face a transfer between hospitals to undergo their surgery. This pathway structure means patients can face significant delays with the potential for harm.
• Following newly published guidance the neurosurgical unit based at Addenbrooke’s hospital in Cambridge has been implementing new ways of working.
• These changes have involved: standardised checklists, strategies to expedite access to theatre, triage of patients for specialist input, new coordinating roles, and new protocols.
• This project is attempting to understand how these changes are being implemented, what their impact is, and what the staff involved in this care think of them.
• We are running periodic surveys over the first two years of implementing these changes but we recognise that surveys don’t always capture all useful information, therefore in this part of the project we are inviting staff who are involved in the care of patients with cSDH to take part in an online interview to explore things in more detail.
• The interviews will look to understand:
  
  • How well are changes being implemented?
  • What has made implementation easier or more difficult?
  • What do staff think of the new changes?
  • Do you think the changes are making care better, or worse?

Who can take part?

If you are a healthcare professional or manager who is involved in

• Implementing new care pathways for cSDH
• Caring for patients with cSDH

within the east of England neurosurgical network then you are eligible to take part. It may be that your role involves looking after such patients frequently, or only occasionally, but your views are still important for us to capture.

We value your time

• We keenly appreciate the pressures NHS staff are currently experiencing. We would be extremely grateful for your participation in this project, your insights will provide a significant contribution to the evidence base for improving the quality and safety of care for cSDH and other specialist surgery in the NHS.

About the project 

• This project is being led by doctors and researchers at the University of Cambridge and is funded by the National Institute for Health and Care Research (NIHR). It is part of a broader initiative focused on improving specialist surgical delivery.
• Although we are exploring the implementation and impact of care changes in the east of England, the project has the potential to impact on the delivery of care for patients with cSDH across the UK.
• Other aspects of the same project will also explore whether these project findings are relevant to other surgical conditions.

What does taking part involve?

• If you are interested in contributing to the project, we will ask you to take part in an interview. In this interview you will be asked questions relevant to the project’s aims.
• The exact questions asked will depend on your role and expertise but the interview will try to understand your views on:
  
  • The engagement and experience of staff with changes to care pathways
  • How often new care pathway components are being used and why this is the case
  • What you think the impacts (both good and bad) have been of changes in care.

• The interview is not a test of your personal knowledge about the delivery, implementation or evaluation of improvement programmes. It is an open-ended exploration intended to gather diverse views. 

Your data and confidentiality 

• Before your interview you will be asked to complete a consent form, confirm or provide some details about your professional role and setting, and book an interview slot. All of this will take place via the online platform, Thiscovery.   
• We will digitally record the interview, with your consent, to help us with our analysis. 
• Your confidentiality will be maintained at all times, and your data will be stored securely. 
• Participation in this project is entirely voluntary. If at any time you decide you no longer want to take part, you can let the project team know at help@thiscovery.org.

Before your interview 

To take part in the project we would ask you to:  

• Read this participant information
• Provide some information about your professional role and setting 
• Complete and return an online consent form
• Book an interview slot with a member of the study team 
• We will ask you to provide a telephone number to support a telephone interview in the event of a technical problem with the online interview system (this is optional) 

During your interview 

We are inviting you to take part in an interview which will last approximately 30-45 minutes. During your interview, you will be asked a series of questions relating to the aims of the project. The questions asked will vary depending on your professional role and particular expertise. While we will be grateful for any time you can give us to provide your insights, you can choose to end the interview at any time without giving a reason. 

After your interview 

After the interview, we will thank you for your participation by email. You can also elect to:

• Receive a summary of the project findings
• Receive a certificate of participation (which may be useful to support ‘continuing professional development’) 

Taking part in this project will help us to better understand how new ways of working for cSDH are being implemented in the ‘real world’. This will help us understand the factors that may impact or enhance the role out of these strategies to other centres across the country.

In this way, your participation will make a positive contribution to improving the quality and safety of NHS services. Your specific contribution to the project will depend on the questions we ask you, which will be guided by your professional role and expertise. 

The project team does not consider there are any significant risks to you from participating in this project.  Our questions will be tailored depending on your professional role and the interview is not a test of your individual knowledge. None of the findings will ever be attributed to a specific individual and the details of your interview will be restricted to the members of the research team named on the study pages.

We recognise the extreme demands and pressures faced by NHS staff at present and you are free to withdraw from the project at any time. 

If you change your mind about taking part in the project you can withdraw at any time without giving a reason. If you want to withdraw from the project before or after completing the interview, please email help@Thiscovery.org. 

Your confidentiality will be maintained at all times and all your personal data will be stored securely.

Before your interview

If you choose to take part in the consultation, the information we will ask you to confirm or provide will include:

• Your name
• Your professional role
• The type of hospital you work in (either the ‘neuroscience unit’ based at Addenbrooke’s hospital in Cambridge, or one of the referring hospitals across the east of England)
• A telephone number to support a telephone interview in the event of a technical problem with the online interview system (this is optional)

Measures to protect your data 

All data you provide will be fully anonymised during analysis to remove any information that could identify people or places. The anonymised data will be stored on the secure University of Cambridge network and will be used only for the purposes of the consultation or related projects of THIS Institute and Thiscovery. Anonymised data may be accessed by the project team, the project sponsors (Cambridge University Hospitals or the University of Cambridge), the project funder (the National Institute for Health and Care Research), or by regulatory authorities for the purpose of monitoring and audit.  

Both Cambridge University Hospitals and the University of Cambridge are sponsoring this project, based in the United Kingdom. We will be using information from you to undertake this consultation. We (Thiscovery and THIS Labs) will act as joint data controllers for this consultation. This means that we are responsible for looking after your information and using it properly. Thiscovery remains the point of contact for all participants. Identifiable information will be stored securely by the project team within the University of Cambridge secure network. For more information about the Secure Research Computing Platform), please see: https://www.hpc.cam.ac.uk/secure-research-computing

We will keep identifiable information about you for two years after the project has finished (this is defined as the point at which data collection is closed for the consultation). This identifiable information includes the following data: consent form and demographic information. Other identifiable data such as your interview audio recording, will be handled as follows.

1. Following the completion of your interview, the audio of your interview will be securely uploaded to an online transcription service Trint.
2. Trint enables artificial intelligence (AI) transcription of audio files and is UK GDPR compliant and ISO 27001 certified. Please see their privacy policy: https://trint.com/docs/platform-privacy-policy and security statement: https://trint.com/security for further information.
3. An anonymised transcript of your interview will be generated on the Trint platform and checked for accuracy by a member of the research team.
4. This anonymised transcript will be used by the research team for their analysis.
5. The audio recording of your interview will be stored (separate to any identifying demographic information) on the University of Cambridge secure research computing platform (SRCP) for two years after the project has finished before being deleted.
6. Anonymised interview transcripts will be retained for a period of 10 years after the consultation has ended (defined as the point at which data collection has finished). These will be stored securely on the University of Cambridge secure network.  

Keeping the demographic and consent information for a maximum of two years after the consultation has finished, gives us enough time to check the results and write reports about our findings. Anonymised outputs arising from the consultation will be shared with study funders, sponsors, and the professional community. If you choose to provide one, your telephone number will be stored securely in SDHS before your interview and deleted after your interview has been completed. 

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the consultation to be reliable and accurate. If you withdraw from the consultation, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can find out more about how we use your information here: https://www.medschl.cam.ac.uk/research/privacy-notice-how-we-use-your-research-data/.  

Taking part in an interview 

If you have opted to take part via a telephone interview an interview booking system is available for you to select a convenient time for the interview. A copy of the booking will be sent to you via email and can be stored in an online calendar if you have one. A copy of the booking will also be stored temporarily in the interviewer’s calendar and will be deleted as soon as the interview is over. We will also ask for a telephone number to support a telephone interview in the event of technical problem in the online interview system but providing this is optional. 

When you take part in the interview, it will be digitally recorded to permit future analysis (you can choose whether to have your camera on or off during the interview).

Acuity Interview booking system

Acuity is a booking software used by Thiscovery to schedule interviews. The software will temporarily store your name and email address and will use this information to facilitate booking interviews. Acuity complies with the UK General Data Protection Regulations (GDPR). Following an interview booking, your name and email address will be sent to the interviewer and held temporarily on the interviewer’s online calendar (which will not be accessible to others for the duration of the project). Participants taking part in an interview may choose to conduct the interview using video as well as audio. Audio and video files will be downloaded to Thiscovery AWS servers. Only audio files will be transferred to secure storage and transcription. The AWS recording (audio and video) will be deleted following successful transfer to secure storage.

After your interview

No personally identifiable information will be included in outputs of the consultation. Although we may use quotes from interviews in our reports and publications these will never be attributable to a specific individual.

The results of this consultation will be used to inform the development of care pathways for patients with cSDH at both a regional and national level. They will also support other linked components of the project that explore whether other surgical pathways might also benefit.

The project is organised by an experienced team of researchers jointly based at the University of Cambridge and Cambridge University Hospitals NHS Foundation Trust, led by Dr Daniel James Stubbs (Honorary Consultant Anaesthetist).

This project is funded by the National Institute for Health and Care Research (NIHR).

The project has been reviewed by an NHS research ethics committee [INSERT NAME OF BOARD AND APPROVAL NUMBER/DATE here].

If you have questions about any aspect of the project, please email the project team at help@Thiscovery.org.

If you have a complaint about any aspect of the project, please contact the Chief Investigator Dr Daniel James Stubbs (djs225@cam.ac.uk), copying the Thiscovery team email address: help@thiscovery.org.

If you wish to raise a complaint about how we have handled your information, please contact the university 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 Commissioner’s Office (ICO) at www.ico.org.uk or telephone 0303 123 1113.