The infographic, which highlights and explains themes from our recent research on Sickle Cell Disease, was chosen as winner of the National Institute for Health Research (NIHR) ‘Let’s Get Digital’ Awards in the Infographic category.
The competition aimed to recognise the ways people funded and supported by the NIHR can ‘get digital’ with their research, whilst raising awareness of research at the same time. Entries were invited across five categories – video, photo, infographic, online community and website. Despite it being the awards first year, competition was strong; there were 165 entries to the competition, and 2251 public votes.
Amy Tallett, Head of Research at Picker, said:
“We’re thrilled to have received the award, and we’re pleased that it allows us the excuse to talk about the findings from the research once again. The research received over 700 responses making it the largest feedback drive of people living with Sickle Cell Disease conducted in the UK to date.”
“Ensuring that we understand the experience of people living with the condition as patients that receive treatment but also as people within families and communities is vitally important to their wellbeing.”
“Communicating the findings of the research in understandable and engaging ways is crucial to raise awareness of their often difficult experience of living with Sickle Cell Disease.”
The research, conducted in 2015, was commissioned by researchers from the NIHR Collaboration for Leadership in Applied Healthcare Research and Care (CLAHRC) Northwest London, in partnership with the Sickle Cell Society.
Focusing directly on patient experience, the survey asked patients about aspects of care that are important to them, including access to care services, information and support for their condition, and their views on care across inpatient, outpatient and emergency settings.
The results highlighted specific concerns about urgent care provision, with many people reporting less positive experiences of A&E attendance versus planned tertiary care.
Respondents felt that urgent care staff were not only less knowledgeable, but also less sympathetic and understanding of their needs, than their secondary care colleagues.
Participants also reported that their friends, family and co-workers did not know or understand enough about their condition and that they generally weren’t given enough information on coping with pain. Read more on the results here: http://www.picker.org/news/results-nationwide-sickle-cell-disease-survey-raises-questions-around-condition-awareness/
John James, Chief Executive of the Sickle Cell Society, commented:
“Few people know that Sickle Cell Disease is the UK’s biggest genetic blood disorder with approximately 240,000 carriers. Over 15,000 people in the UK live with the condition, and so it’s imperative that we continue to raise awareness of the experiences of these people, their friends and family, and their wider communities who live with it day in and day out.”
The infographic has been displayed and used frequently in the years since the Sickle Cell Patient Reported Experience Measure (Sickle Cell PREM) findings were published.
Ganesh Sathyamoorthy, of CLAHRC North West London, added:
“Our intention for the infographic was that it was a way of bringing the key findings highlighted in the research to life. It is easier to ignore statistics such as, ‘86% of respondents’ feeling that their ‘family, friends and co-workers do not know or understand enough about their condition’, when they’re included in a report, but when they’re displayed in colourful infographics they’re harder to dismiss. Many remarkable NIHR funded research projects entered the competition and it is our honour to be chosen as the winners for the Infographics category. The fact that September is National Sickle Cell Awareness month, it is a great way to start the month on a positive and we hope this win can help bring our findings from the Sickle Cell PREM to new heights.”
Chris Graham, CEO of Picker, concluded “I’d like to congratulate everybody who entered and was shortlisted for the Let’s Get Digital awards, and I’d like to thank NIHR for recognising progressive and forward-thinking work in the healthcare research sector.”
“I’m proud of my staff for their work on this, and thankful to our partners in the Sickle Cell Society and CLAHRC North West London for their support and collaboration with us.”
Members of the media can contact Helen Thorne, Communications Manager at Picker, for more information on the research and the infographic, and to arrange interviews.