Are patient co-authors an equal part in the research team?

The short answer is NO and there needs to be a big changes for that to happen. I have actually written this blog post twice. The first incarnation was me getting my feelings off my chest but I decided not to post it as it would not be helpful to anyone. Instead I have decided… Continue reading Are patient co-authors an equal part in the research team?

Patient Advocates are volunteers

This gets forgotten so many times. I have spent a lot of time thinking about this post, how I should word it and if I should share it but after speaking with a number of other volunteer patient advocates I feel it is important to share what we face. Firstly though I need to clarify… Continue reading Patient Advocates are volunteers

The Impact of Conflicting Information

Healthcare is a minefield sometimes and being a patient navigating through it can be really hard work and not the type of hard work you want to be doing when you are unwell or in pain. With chronic illness you often become an expert in your own condition and can therefore speak up for yourself… Continue reading The Impact of Conflicting Information

Patient Aims vs Clinician Aims when managing long term conditions

Clinicians showing vulnerability and learning from patients is so refreshing. This is my recent experience which I wanted to share as I hope it will allow patients to understand clinicians but also hope that any clinicians reading this will understand what is important to us as patients. My involvement in the Severe Heterogenous Asthma Research… Continue reading Patient Aims vs Clinician Aims when managing long term conditions

An inspiring few days at the SHARP Stakeholder Board Meeting

If I had to be honest I was not sure what I thought would be the outcome of the Stakeholder Board Meeting for SHARP an ERS Clinical Research Collaboration. During my time as a patient involved in research I have been to many meetings, board meetings, scientific meetings and each time gone into the meeting… Continue reading An inspiring few days at the SHARP Stakeholder Board Meeting

Confidence in your own voice

Surprisingly I never used to be vocal. 5 years ago I used to much rather sit in a room, listen and not participate. I felt like I had no right to contribute to the conversation because who was I. I was just a patient, a person who lived with a chronic health condition, but I… Continue reading Confidence in your own voice

Attending (online) conferences as a patient.

The patient voice is becoming such a valuable asset to medicine, medical research, pharma development and medical conferences. After all you can learn all the technical stuff about the anatomy and physiology in text books but you can never learn just what it is like to live with a certain condition unless you go through… Continue reading Attending (online) conferences as a patient.

Worries of being a patient advocate

Patient advocates seem to give off this impression of being fearless, great speakers and always knowing the right thing to say. I often looked patient advocates and admired their confidence and strength for the work they do. I still do. It has only been in the last few years that I have really identified as… Continue reading Worries of being a patient advocate

Finding your other path in life.

From a young age we all have our dreams and aspirations as to what we want to be or do when we grow up. Our childhood dreams often don't quite equate to the reality of life. When we grow up you think that being Superman is just as much a possibility as being a Dr.… Continue reading Finding your other path in life.

Bringing the patient voice to Research and Development

A lot of the work I do is speaking to people about what it is like to live with asthma. Asthma is a condition that you should be able to live with and it won't interfere too much but for so many people asthma dictates their life. It is so important for those who work… Continue reading Bringing the patient voice to Research and Development