Help develop a framework to guide the design and planning of large-scale change programmes in health and healthcare

• This project is being led by THIS Institute, an academic research centre at the University of Cambridge that produces evidence for healthcare improvement and innovation. You can find out more about THIS Institute on their website.
• The project will be hosted on Thiscovery, a secure online platform that enables the health and care system to improve and innovate through collaboration. Thiscovery is developed and run by THIS Labs, an independent organisation formed as a strategic collaboration between THIS Institute and The Health Foundation. THIS Labs administers this project for THIS Institute.

How do I take part?

• To take part, you will be asked to complete an eligibility check and an online consent form. You will then be asked to complete the survey.
• The survey will ask for your feedback on a framework for designing large-scale change programmes in health and healthcare and includes optional questions about your professional background.
• After completing the survey, you can optionally provide your contact details to receive study updates or participate in future phases of the study.
• If you agree to be contacted about future phases of the study, we may invite you to participate in a second survey round or to a simulation exercise to test the framework.  
• Participation in this survey, a subsequent survey or simulation exercise (if applicable) is entirely voluntary. Filling out the first survey does not commit you to filling out the second survey or partaking in the simulation exercise.  

Do I have to answer all the questions?

• You do not have to answer all of the questions. However, we hope you will answer as many questions as possible, as this will provide the best possible information about your views and experience.

How much time will it take?

• This survey is expected to take 20 minutes, but you can take as much time filling in the survey as you require.

Can I take a break part way through answering questions?

• Yes of course. You do not have to answer all the questions in one go.
• If you do need to take a break, use the 'Next' button to save your answers to that point. Please use the same device and the same browser to pick up where you left off.  

Is there a deadline for completing the questions?

• The deadline for completing questions is 20 August 2025. Please do answer all the questions you wish to by this date.

What if I want to stop taking part?

• If you change your mind about taking part in this project you can withdraw at any time without giving a reason. However, it may not be possible to remove data that have already been submitted. To withdraw from the project please email help@thiscovery.org.

What are the possible benefits of taking part?

• Your input in this study is important; it will help to develop a framework for designing effective, large-scale programmes. It is unlikely that the study will be of direct benefit to you. However, taking part will give you the opportunity to share your expertise and experiences. We hope the study will improve healthcare for staff, patients and people supporting patients in the future.

Are there any disadvantages or risks of taking part?

• There are no identifiable risks to you from participating in the surveys, but we appreciate that many people working in this area face significant demands and pressures and that finding the time to take part might be a challenge. We have therefore designed the first survey to be as short as possible. If a subsequent survey is required, it will also be designed to be as short as possible.
• You do not have to answer any questions you do not want to and can stop at any time. If you find taking part in this project distressing in any way, please get in touch directly with us via  help@thiscovery.org.

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What happens to my answers?

• Your answers will be analysed along with the answers from all other participants and will be used to update the draft framework. Findings from the project may also be published, for example in reports or academic journals, and may be publicised on social media. Nobody will be able to identify you in any findings that are published: any quotations used in reporting will be anonymised.

How can I learn about the findings of the project?

• You will be emailed a summary of findings when they are ready, if you have chosen to be contacted for this purpose. You can let us know at the end of the survey, should you choose to take part.

Data security

• Your right to privacy is important to Thiscovery and to the project team.
• Thiscovery takes the security of your information seriously and has policies and processes in place to ensure that your data is safe.
• ‍Thiscovery’s privacy policy describes the way information is collected, used and protected. 
• For specific information about how information will be used in this project, please see below. 

Who is responsible for collecting my information?  

• THIS Labs is collecting information about you on behalf of THIS Institute (University of Cambridge).    
• Under data protection legislation, THIS Institute (University of Cambridge) is the Data Controller for the project. This means that they are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used.  They are supported in this by Thiscovery, who are data processors for the information you provide in your answers to questions in the survey, acting on behalf of THIS Institute (University of Cambridge).   
• Thiscovery is the Data Processor for the survey/s in this project. 
• Thiscovery also hold the role of separate data controllers for your contact information (name and email address), should you choose to provide this at the end of the survey and give consent for Thiscovery to use this to contact you. Thiscovery are therefore also responsible for making sure this personal information is kept secure, confidential and used only in the way you have been told it has been used.

What information will you collect about me?   

• To take part in this project the project team may collect some information that could identify you, called “personal identifiable information” as follows:
  
  • Optional information about your role and involvement with national programmes.
  • Your name and email address if you would like to be involved in future phases of the study (second survey and/or simulation exercise) or receive a summary of the results.

What is your lawful basis for processing my personal information?    ‍

• Thiscovery is collecting and storing this personal identifiable information in accordance with UK data protection laws which protect your rights. These state there must be a lawful basis (specific reason) for collecting your data. For this project, the collection of the personal identifiable information is done on the basis of “the public interest” and “a process necessary for research purposes”. 

How will my personal information be looked after?   

Your data will be looked after in the following way: 

• If you opt to provide your name and email address for Thiscovery, Thiscovery will only contact you for the reasons you have consented to, for example to take part in related future activities. In these circumstances, your name and email address are not linked to the information you have provided by answering questions in the project.  
• The only circumstances in which THIS Institute (University of Cambridge) will have access to your name and email address (if provided) is if you have given permission for them to contact you directly. In these circumstances, your name and email address are not linked to the information you have provided by answering questions in the project.  
• If you opt to provide your name and email address for THIS Institute, this will be shared with THIS Institute. THIS Institute will store your name and email address on the ‘HubSpot’ platform, a secure customer relationship management (CRM) database. THIS Institute will only contact you with your permission to provide a summary of results, invite you to the next part of this project or to contact you about relevant future opportunities.  Participants' contact details are kept for as long as legitimate interest exists (e.g. the project is ongoing or still relevant to the individuals) or until the individual unsubscribes.
• Thiscovery separate your name and email address (if provided) from any answers you provide as part of this project and store these securely in separate datasets, one containing contact details and one containing your project responses.   
• This means that in the project dataset, instead of using your name and email to identify your responses, an ID number will be used instead. This is called pseudonymisation.  
• The pseudonymised dataset is what the project team will use for analysis. This dataset may contain other personal information as part of the answers you give to questions in the project, such as information about your job role.  
• Unfortunately, if you opt out of providing your name or email, you may not be able to withdraw from the project if you decide later you no longer wish to be involved, as it may not be possible to identify your response. 
• Thiscovery takes appropriate technical and organisational measures to ensure that your information is kept secure, accurate and up to date, and only kept as long as is reasonable and necessary.   
• Although Thiscovery uses appropriate security measures once your personal information is received, the transmission of information when you submit it over the internet is never completely secure. Thiscovery does its best to protect personal information, but cannot guarantee the security of information transmitted to its website, so any transmission is at the user’s own risk.   
• Further information on how Thiscovery will process your personal information, and how to manage your Thiscovery account (if you have one), is available in Thiscovery’s privacy policy.   

Will my personal information ever be shared?   

• Thiscovery will never share personal information in any way not described in this participation information or in Thiscovery’s privacy policy.   
• However, occasionally information provided within a project may be useful to better understand how to conduct online research or to develop new approaches to analysing data.   
• If you agree to take part in this project, Thiscovery may use some of the information gathered from you to improve the methods Thiscovery uses. If, to do so, Thiscovery needs to share information with external researchers or analysts, all information will be fully anonymised.   
• By anonymised, that means Thiscovery will:
  
  • remove the ID number used to link your answers to your name and/or email (if provided)
  • locate and remove any other identifying information (for example, names of NHS Trusts, place names used in free-text responses)  
  • locate and remove any other indirect identifying information (such as specific details about experiences used in free text responses) 
• Occasionally, information gathered for one project may be useful for researchers working elsewhere on another related project. If you agree to take part in this project, THIS Institute (University of Cambridge) or Thiscovery may share the information we gather from you anonymously with these like-minded researchers. Before any information is shared, the external researchers will be required to set up a strict data-sharing agreement with either Thiscovery or the THIS Institute (University of Cambridge) and will be bound by the same ethical and data protection requirements.

How long will my personal information and identifiable responses be held?   

• THIS Labs and THIS Institute (University of Cambridge) will not keep personal data longer than is necessary for the purpose or purposes for which they were collected. For this project, this means that once the project team have finished all analyses and produced all the outputs needed for the project, all organisations will take all reasonable steps to destroy, or erase from systems, all data that is no longer required.

What if I have a complaint or concern?   

• For technical problems or questions about the platform, please contact the Thiscovery team at help@thiscovery.org.  
• If you have a complaint about any aspect of the project, please contact the head of Public Health and Primary Care at the University of Cambridge, John Danesh, at john.danesh@medschl.cam.ac.uk.  
• 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 happy with their response or believe they are processing your data in a way that is not right or lawful, you can complain to the Information Commissioner's Office (ICO) at www.ico.org.uk or telephone 0303 123 1113.

How can I find out more about how my personal data is used?   

• The University of Cambridge’s Medical School data protection notice describes how they use personal data and explains how you can contact them. They will protect your information in line with the requirements of the UK Data Protection Act 2018.    ‍
• Thiscovery’s privacy policy describes how Thiscovery uses personal data and protects your information.

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