After the angiogram I was randomised to the results group, told I had microvascular heart disease, given some medication and sent on my way. I have no cardiac risk factors apart from my underlying auto immune disease, no one was willing to explain my diagnosis in the context of that. I was given no written information. I wasn’t asked about ongoing communication from the trial team and whether I would like a copy of my and the trial results.
I reflected on my experience and felt I had some insight to offer the trial team not just confined to improving the PIS and the patient experience. Recruitment and retention can be a issue in clinical trials, so surely patient involvement could only help? Researching my diagnosis proved difficult as there is a paucity of research into microvascular heart disease. I started thinking about the research questions that would be important to me as a patient and felt I would really like to help disseminate the research findings.
I had all these thoughts and ideas but no way of communicating them to the trial team! My role was to be a recipient of the research process, not an active participant! I reflected on all these points and then decided to e mail the PI with my thoughts. They were very receptive and as a result we are due to meet soon.
Of course you may think I am not a “ typical “ patient but I don’t believe I am very atypical! If we believe that PPI in research is essential then shouldn’t we be actively promoting PPI by any means?
My #WhyWeDoResearch: Because it matters, it can be the difference between life and death, living or existing. It gives me hope and makes me feel I still have something to contribute despite ill health. Partnership and collaboration improve all research outcomes.