Health charities publish lots of information about health conditions and are an important source of support for many people. So, we are working with a number of national charities to test the impact of explaining the role of patient data in their guidance. We’re looking for an evaluator to help us.  

A bit about the project 

Last year, we worked with a design agency to research and prototype new ways to develop people’s understanding about patient data. We wanted to find out when and how people like to receive information about their health and care, to identify good moments to explain the role of patient data.

We heard that people are more likely to be interested in how data is used if it helps them learn about their own condition(s) and treatment. And we also learned that people may be more likely to take action if they can see the role of patient data behind a recommended action.  

This project builds on that work. We’re supporting a community of practice of national health charities to test out these insights, by adding explanations of the role patient data has played in developing their guidance.   

For example: let’s say that some research using patient data has informed the development of a drug or treatment. Does explaining the role of data in that specific instance also help develop people’s general understanding of when and why data from them might be used? And does it also make them more likely to follow the treatment or regularly take the drug? 

What we’d need from you 

We’re looking for an organisation, team or individual to evaluate the impact of including information about the role of patient data in the health charities’ guidance. We want to know the impact on: 

  • People’s understanding of (and interest in) how patient data is used.  
  • Levels of engagement with health information (for example, take-up of guidance).  
  • The partners involved in a community of practice, including the development of new partnerships and understanding among members of how patient data is used.  

It is expected that there will be four main components to this work:   

  1. Collaborative design of the evaluation: working with the community of practice and our team to scope the areas to be evaluated. 
  2. Evaluative research: running interviews, focus groups and surveys, reviewing click-through/website usage etc. and analysing the findings.    
  3. Sense-check of preliminary findings: a virtual round table with the community of practice to collaboratively consider insights and allow discussion. 
  4. Written outputs: the format of this is to be decided but it’s likely to be a report. 

The project is expected to run for around 9 months, though we recognise there may need to be some flexibility in light of the Covid-19 pandemic. The request for proposals is an outcome specification but we expect bids to be in the region of £25,000, excluding VAT.  

Next steps 

If you’re interested in this work, please submit a short expression of interest by e-mail to Harri Weeks by 5pm on 15th June. See the full request for proposals for Harri’s contact details and more information about the project and how to submit a proposal.