It was the title of the PIF event that intrigued me – Patients as Creators of Health Information. Can patients or service users truly create their own stories or can these stories only emerge into the world if they have been prepared and polished by communication experts?
The stable door on this one is of course wide open – user content sites are two a penny.We have long been fans of Patient Opinion. How are patient or service user views being monitored, heard and used?
Monitoring and Taming the Beast
First question – how to keep up with what is being said about you? Can you control this and manage to keep reputation and trust in the face of criticism and abuse? There are softwares that will monitor and sort comments on such media as Twitter to alert digital comms monitors. This captures the external views – the next question is how to domesticate the often savage and uncontrolled outbursts of the beast? How best to bring them in-house and to engage those commentators in a way that uses those narratives to build a relationship and sufficient trust for the original story tellers to let the organisation reproduce and distribute those stories for its own purposes.
Managing Narratives – a Governance Thing?
This is now a big part of the comms professional’s role and job titles now often reflect a explicity protective role e.g Risk and Reputation Advisor. A presenter from a children’s charity gave a useful summary of the rules/ guidelines/ processes around using service user case histories and how to offer them to the media or use them on their own site. The charity can be commended for the care taken to respect the privacy and sensitivities of the original ‘story owner’ reflecting organisational awareness of the ethical point about ownership of the narrative being co-opted for say fundraising. But does that story lose something in being turned from tiger roars into pussycat You Tube video?
It was Kevin Crowley Executive Director of CRI who offered an interesting process to retain the original flavour and ownership of the story by making an explicit link between the way the organisation approaches its governance and how that approach can be extended to manage information/ communication. This organisation’s service users have been helped to move on from chaotic lives which put them in harm’s way and it would be surprising if their stories did not in part reflect that ‘out of control’ element. Talking to Kevin afterwards, about the potential for damage of the unconsidered anecdote from people who were still angry and at sea, there was a recognition of the ‘anarchic’ mood threatening to subvert the organisation and destroy reputation and thereby the prospect of future contracts. Risky stuff.
Risk Mediated by Governance Structures
Fortunately service users back away from putting at risk the organisation that has helped them and is ready to help others in future. Structures of engagement and governance like service user councils or Board members – traditionally used to make in input to policy formation and illuminate the user experience – can be adapted and used to mediate those stories so that they remain ‘owned’ by the persons who experienced them even if they are taken over and used for purposes such as marketing or new business pitches. Here users are not only the creators of their own information but guardians of that narrative’s authenticity and the power that that confers. The communications professionals still have a role but they are not ‘in charge’ – their job is not homogenisation but rather facilitation.
The people who live the stories can become their own authors and one way to gain the confidence and skills needed to do this is to become aware of the relevant literature. There is now ‘Bibliotherapy’ – an approach which matches books to life stages, problems and choices. Ellie Berthoud has co-written a book about it reviewed in the Guardian. In the same spirit we write this blog in part as advice but more perhaps as reflection. What was the book that most moved you in the last 12 months and what sort of a mood where you in when you read it and did that change at all for you? The Dice Man anyone?