Your data, your thoughts

Accessing patient health records for research: Thoughts from the UK’s PH community

Access the findings here or scroll to the bottom of this page

This research was conducted in June 2023

Here at the PHA UK we firmly believe that all pulmonary hypertension research should put patients at the centre.

There may be times when researchers want to know how the patient community might feel about their clinical data (health records) being accessed as part of a study, and with upcoming research projects that need the patient voice to guide their development, we conducted this survey to capture opinions and ensure that voices are heard.  

Research studies can be used to find out many different things, so our survey asked for people’s thoughts about their data being accessed in various circumstances. You can see the findings here.

This online survey was conducted in June 2023 and 293 people with PH responded. We also asked the same questions of people whose loved ones have PH, as their opinions matter too, and you’ll find these 38 responses in the second part of this report.  

These findings will help inform future studies in the field of PH. Thank you to everyone who shared their thoughts and opinions.

A word of reassurance: All studies involving patients and their kinship must, importantly, gain approval from ethics committees. If the study seeks to access patient data, the ethics of this will be considered as part of this process. Researchers cannot access your data ‘as and when they please’, so please be reassured it is safe.