The patient story is dead. Long live our story.

The Patient Story

First they wouldn’t let us into the room.

Then we were allowed to sit at the back, but not say a word.

Eventually we could sit in the audience and put our hands up. Occasionally we got asked to say something.

When we did begin to ask questions, people laughed at us and made us look fools. ‘Is that the best you can do?’

We said to them.

It took a long time before we were asked to take the stage. But it was at the end of the day. Everyone had gone home.

Or after lunch when everyone was asleep.

Then we were first on (yay!) but only for a few minutes, so everyone could feel better about themselves the rest of the day.

(For some reason they liked it even more if we made them cry.  ‘So moving’ they would say, while looking over our shoulder.)

Or on a panel where it was difficult to get a word in edge-ways.

Now we get to tell our story throughout the day.

But I do sometimes wonder if the real conversation has moved to another room.

No one move. Lock the doors.

No one gets out of here. Until I’ve told my story.

****

Of late I have been reflecting on the use of patient stories. Hence the rough little ditty above. I deliberately say ‘use’ because there is a bit of me which wonders if your, my, our story is being used and abused. On a daily basis.

Only a few days ago I was in a meeting where a good colleague was very forcefully saying ‘we must get the patient story out there.’ And I wondered and worried about this because it sounded as if that story was not going to be owned any more by the person whose story it is.

There’s no doubt that patient stories can have an incredible impact. Just look at how Dame Tessa Jowell and Charlotte Caldwell’s stories this year have resulted in important changes in brain tumour research and access to medicinal cannabis respectively.

But I also suspect that patient stories are being manipulated by people across public relations and the media. With good intention and effect.  Possibly. But it doesn’t matter. The ends don’t justify the means. In my opinion. Although it’s true I’d rather hear their story than not. It’s a dilemma.

The patient story has become ubiquitous in the world of health care and research. Perhaps it is over-used. As an eighties Live Aid child (you can tell I have been to watch Bohemian Rhapsody) I remember people used to talk about ‘compassion fatigue.’ Not that I believed it. Is there a public involvement, a patient story, equivalent?

Will there come a time when people ‘switch off?’  How long before they skip our story to reach the end sooner? How do we prevent that from happening? Let’s hope we don’t get a trend towards only wanting to hear the ‘extreme’ story. A bit like we have ‘extreme sports.’ Will we need to be doing motor-cross or riding back while tell our tales (or should that be ‘tails’) just to attract attention. Anyway, the worse the better. TV and radio seems to be heading in that direction. It feels like a long way from an ‘everyday story of  country folk.’

Or will no one tire of them because everyone likes a good story. I hope so.

Making sure we can tell our story in the way that we want to seems an important principle to hold onto. Patients Included – by advocating for patients and carers to be involved in the organisation of conferences – has helped ensure patient stories have the best setting and arena in which to be heard.

Supporting people to tell the story in the medium of their choosing and creating a safe environment in which that can happen is another one.  There are so many technological innovations that make this possible.  It’s so good to see so many people already using them.

Tomorrow I am off to a conference about the impact of public involvement in research. I am looking forward to it. But I think I will get a bit fed up with how many times the words ‘case study’ are used. Sounds a bit medical don’t you think? Like something that can be locked away; or someone to be locked-up perhaps?  Here’s the template they say handing a piece of paper headed ‘Patient made (us look) good case study.’

I think the best stories come from conversations. We become characters in those. But the story is communal. We all learn something from it. The job of research institutions is to create the right environment in which those conversations can happen and for the participants to record them unvarnished in the way they want to.

In the meantime. Hold onto your story. It’s precious to you. It’s priceless to me.

2 thoughts on “The patient story is dead. Long live our story.

Add yours

  1. Thank you so much for this. I also have been to a few conferences where I felt “less than” because my story was not tragic enough for them.
    I am a WEGO patient leader and I would like you to look into joining. Their Patient Leader Network includes more than 100k patients and caregivers, across the world addressing virtually all health conditions and topics. It’s a fantastic group of health advocates, influencers and experts that are transforming healthcare by sharing their insights and expertise.

    They are committed to elevating the voice and visibility of Patient Leaders

    Like

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