Saturday, 2 August 2014

Come in, come in it’s nice to see you. How’s yersel’, yer looking grand

Andy Stewart, in the spirit of the Commonwealth Games, may be an unusual start to this blog but it oddly reflects how it felt being interviewed for Healthtalkonline's latest development about some of the things I have been doing as a former cancer patient in the world of research.

Like Andy Stewart, they were very welcoming. Unlike Andy, they certainly did not ask and then answer the question about my health and wellbeing. 

Healthtalkonline wants to listen to you!

Healthtalkonline gathers patients’ stories and experiences. It was started by two individuals who wanted to share their experiences of being patients as a means of helping others. We have all heard the 'patient story’ being told at any event. It can be a moving and powerful means of understanding the raw experience of treatment and the effects on the individual and their families. 

It is however difficult to find evidence to suggest that any evocative story on its own makes any real long term effect on subsequent care. The examples offered by Healthtalkonline means we can take the patient story and use it with our local communities, workplaces and patient groups.

Healthtalkonline has developed even further and is now looking at active patient involvement in research. 

Come in, come in its nice to see you… This should be the song for research. A welcoming voice, a cheery greeting to take part in research, to get actively involved, to donate time, effort, funds or even human tissue.

The idea of capturing the experiences of many of us who who taken those extra steps to help researchers improve their questions and research proposals, is excellent.  many of those interviews have also worked to change the policies and practices of research to making them more patient friendly and to shift the culture from doing to patients to one which is more of a shared endeavour.

To hear from people who have been involved for less than 5 years is particularly valuable and from some, like Maxine, who have been involved even longer than me

I particularly like the 'overview' which then subdivides the interviews to address particular issues about involvement. 

This resource will be helpful for people getting involved for the first time, it will help the development of active involvement in research and be of use to researchers for years in the future.

I quite like the idea of longevity. The notion that in the coming months, years and centuries we will have a historical record. Imagine if we could have heard from people of the past. Daniel Defoe’s book A Journal of the Plague Year was actually written over 70 years later so, although excellent, it is hardly a first hand account. What was it really like for the patients and their carers, for those who tried to find solutions, to mark the doors and carry off the bodies? 

Although a morbid thought, might we have sought better public health a full century before we did?

And, talking about things that are old you might want to hear my interview!