This blog has been contributed by Natalie Koussa, Programme Lead – Wellbeing Our Way, National Voices.
I was thrilled to be invited to present the Special Award for Patient Engagement at this year’s British Medical Association Patient Information Awards.
The winning entry – British Heart Foundation’s My Story Their Story – was described by the judges as “a campaign with real heart that will undoubtedly change lives”. Using two short films within a social media campaign, My Story Their Story has reached an impressive 23,000 young heart patients and their friends. So, what makes this piece of health information so innovative and impactful?
Firstly – and most importantly – coproduction. I was struck by the creative and committed ways in which the project approached coproduction. My Story Their Story took two years to develop and included multiple opportunities for young people and parents to engage in and drive the process, including a residential weekend and a test screening at BFI Southbank. A range of clinical perspectives were also included, to ensure that the information provided is medically accurate and reflects current practice.
There were clear points at which the project took a different direction in direct response to the contributions of the young people involved – most notably in the creation of two short films (rather than the single film originally planned), to better reflect the diverse experiences of the young people directly affected, as well as their parents and friends.
Coproduction has also meant that the creation and sharing of content is based in the methods preferred by young people themselves: a crucial factor in giving My Story Their Story such a wide reach. The inclusion of different aspects of young people’s lives means that the information is easily usable in a range of settings, including health clinics and schools.
Secondly, the films have an effective call to action: encouraging young people to engage in face to face peer support, through British Heart Foundation’s meet@teenheart programme. meet@teenheart aims to provide opportunities for young heart patients to meet other young people living with heart disease, to develop their confidence and communication skills and improve their understanding of their condition.
The project identified that many young people need support to develop their confidence before engaging in face-to-face support and so My Story Their Story uses real life experience to convey a strong and emotive message to help young people understand that they are not alone in their experiences of heart disease.
Finally, My Story Their Story is exemplary in the way it applies current thinking around health literacy. The World Health Organisation defines health literacy as ‘the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health’.
By creating films which are based in real life experience – not just of the young people themselves, but also their family, friends, health professionals and schools – My Story Their Story has created information which can engage and educate whole communities: offering choices and breaking the isolation experienced by too many young heart patients.
For me, My Story Their Story raises important questions for all of us involved in developing health information for young people:
- Are young people taking a central role in creating the kinds of information which they find engaging and useful? Of course, not all projects or organisations will have the resources used within My Story Their Story, but nonetheless, trying different approaches will help us to move beyond information created for young people to information created with
- Could the health information we are developing help to create and strengthen communities – whether virtual, geographical or between people with shared experiences?
- Will this health information enable young people to make choices about the aspects of their life which matter to them? This means information which goes beyond education, and aims to build confidence and a sense of taking control of their experiences.
My Story Their Story is an inspiring example of what can happen when the answer to all three of these questions is yes.
Natalie Koussa leads National Voices’ Wellbeing Our Way programme, which aims to enable people to live well with their long term health needs. The programme works through charities and community organisations and is supported by The Health Foundation.
Wellbeing Our Way has a Person centred information and helplines POW WOW (shared learning workshop) on 14 October in central London. If you work within a charity or community organisation, please click here for further details, including how to register.
In 2014 PiF published a Guide to Creating Health Information for Children and Young People. You can find our more about the guide here.