Understanding Patient Data

Co-producing honest and useful explanations of how and why patient data is kept secure in the health services.

What was asked?

Several recent pieces of research have reported that patients want honesty about how their health data is kept safe while it is used for their care and communication between staff and health services. Understanding Patient Data commissioned Kohlrabi to find out what members of the public already know or want to know about the security of health data, and to collaborate with members of the public to shape honest explanations of that information.

What we did

Behind the eventual output sits a rigorous three-stage research process triangulating qualitative and quantitative methods:

A rapid systematic review surveying the peer-review, grey literature, and media landscapes to establish key knowledge gaps in public understanding of health data security
A sequence of public involvement activities began with a deliberative dialogue of 47 members of the public exploring what the public wants and needs to know about health data security in direct care settings, and how that information should be communicated.
Building on the resulting insights, three smaller groups of the same public members (totalling 15 people) co-created specifications for public-facing explainers of health data security
Throughout this process, emerging content was tested factually through six interviews with health data security experts and reviewed by the Project Steering Group.

This multi-method approach allowed us to create a specification for a set of resources which answered the public need in a very complex subject which few of our participants had ever thought much about.

What we found

Participants suggested that, by addressing the concerns they had raised, effective health data security resources could be developed to improve public trust, awareness, and proactive engagement with data protection measures.

Insights from their conversations fell into four broad themes of implications for the development of a set of resources to be produced by Understanding Patient Data, to empower the public to better understand the basic facts of health data security and to make informed choices about their own data.

Information should feel personal
Transparency builds confidence
Proactive assurance of accountability and action
Useful information- now and into the future

Understanding Patient Data will take this project forward by working with a creative design agency to further shape and develop the specifications and ultimately produce the recommended resources likely by Autumn 2025. As with all UPD’s resource, these will eventually be available on a CC-BY license for all to use in their own suite of resources too.

UPD will also work to incorporate the recommendations shaped by this public engagement work into their broader policy messaging around health data security and beyond, ensuring that the public view continues to be heard and promoted.

Read the full report HERE.

“Thanking my lucky stars since I have come across your contact. The group with facilitator was simply amazing! For a long video call, time flew by quickly and we all left the workshop more knowledgeable, positive and energised. Institutions often go by the deficit model where members of the public are not knowledgeable or familiar enough with complex issues. The day proves this assumption wrong: health data security is far too important to let it in the hands of few experts, what is at stake affects us all in different ways. Everyone has something to contribute to the discussion and improve suggested ways of enhancing the security of our health data. Profound thanks for this positive experience (all expectations met!) and best of luck with the next steps”

Testimonial from UPD Research Participant

“It was an absolute pleasure working with the Kohlrabi team. They are professional, communicative, and highly skilled in their work, and are also just a really warm, friendly, and personable team to meet with every week. They handled all the complexities and fuzziness of our research topic with curiosity, flexibility, and collaboration. We really appreciate the whole team’s time, effort, and kindness through the course of this project, and would happily work with them again in the future.”

Testimonial from Understanding Patient Data