Tag: Patient involvement

An open letter to the participants of my Hepatitis C study

© Kotryna Zukauskaite

For World Hepatitis Day (28 July), Dr Philippa Pristerà shares an open letter to the people that she met and interviewed early last year as part of her research study exploring the experiences of people living with and accessing care for Hepatitis C, and their perspectives on cure.


Dear all,

I am writing to you because you took part in my interview-based study ‘Viewpoints from hepatitis C: accessing and experiencing cure’*. Some of you I met about a month before I gave birth to my daughter, others would have met my colleague Jane Bruton who kindly took over while I was on maternity leave. Since my return to work, I have spent my time reading over the interviews to see what key themes came through and would like to take this opportunity to update you.

I want to say thank you

Thank you for sharing your story; for sitting down with a complete stranger, a heavily pregnant one, to be interviewed about your life. To help me build the context around your experiences and better understand your story, you revealed a great deal about your expectations and your beliefs, your current and past behaviour and their consequences. I was struck by your openness, and so grateful for your trust. (more…)

Bringing patients together to tackle heart disease – the Heart Hive

Many researchers study a particular disease because they have a personal connection to someone who has been affected. For researcher Dr Nicky Whiffin, it happened in reverse.


I had been researching cardiomyopathies (diseases that affect the heart muscle) for a couple of years when my mum suddenly became very ill. Even walking up the stairs was a struggle, she had to pause halfway to catch her breath. Having just been through a very tough patch at work, it was put down to stress. I remember clearly what should have been an amazing trip to Paris in March 2016 to see England’s rugby team win the six nations grand slam – instead the trip was dominated by us all worrying about my mum’s illness. (more…)