As recently as 2011, Cardiovascular Disease (CVD) was the leading cause of death in the UK. However, over the past 20 years, the death rate has remained in decline, and there are now more people living with heart and circulatory diseases than ever before.
To meet the needs of this growing population, the British Heart Foundation (BHF) needed to fully understand all the psychosocial and clinical management challenges that living with these diseases raised.
This clarity would help the charity to refine its focus; did it need to improve its information, or lobby for change, or better support clinicians and sufferers? How best can the charity help those in need? This was a key moment for the BHF, as the survey results would directly influence future strategy.
Not having undertaken a survey with this range of insight before, BHF needed to ensure that whoever ran the survey had the necessary expertise to not only manage a large, meaningful survey that reached a wide range of participants (both patients and carers), but also to analyse the variety of responses that were particularly ‘free text’ heavy. They also wanted to ensure that patients’ experiences were paramount in not only the design of the bespoke questionnaire but also in the feedback process.
As a charity that pioneered the principles of person centred care, Picker worked with BHF to develop a bespoke survey that ensured people’s needs and preferences were placed at the heart of their research. In addition to the usual methods, the bespoke survey utilised new methods of social media analysis (using a media intelligence platform to analyse the types of keywords used when writing about CVD on social media and blogs), focus groups and interviews as well as an online survey, to more easily identify key areas of challenge and unmet need of people affected by CVD. This extensive reach allowed for really granular feedback which was extremely powerful.
With responses from more than 13,000 people, the survey results revealed, for the first time, the main psychological, social, and physical consequences of CVD – any of which require considerable adjustments in an individual’s life. As this sort of in-depth research was new to BHF, the findings were most impactful, giving the clarity needed ahead of the charity’s strategy review.
The participants’ meaningful responses to the survey questions gave important insights into the key gaps in care that existed for people living with CVD and their carers. Some of the key findings included a lack of continuity of care, the need for a single point of contact, and the requirement for consistent information. Lack of help with making changes to diet or exercise were also commonly cited, and a major issue (for both patients and carers) was feeling sad or depressed and not knowing where to turn for help: many noted that their physical ill-health was asked about, but mental health was not considered, or seen to be a priority.
The survey was commissioned to inform future BHF strategy and the findings have fed heavily into the charity’s new approach which launches in 2019. A key change of focus for the charity has been a move from ‘we’ll tell you’ to ‘we’ll listen to you’. A patient focused approach rather than focusing on the clinical side of things is now at the forefront of strategy, and this new policy echoes Picker’s own principle of person centred care.
There is no ‘one size fits all’ fix that will address all the issues raised, but the clear evidence for the need for change provided by the survey means that priority areas will now receive particular attention. BHF has already initiated working groups with healthcare professionals and stakeholders using the findings to begin work on innovative strategies. For example, the need to have accurate support available online and via various social media platforms has led to the development of a new range of social media cards and info graphics across multiple platforms to address the key gaps that were cited, and to make it easier for people to find the support they need. Sometimes it is the small, simple measures that have the greatest impact.
Above all, the need for clear information, communication, and support for self-care combined with an understanding about the psychosocial management challenges of living with CVD came through loud and clear, and is now at the forefront of the BHF’s new strategy. It will make a huge difference to the care offered to people living with heart and circulatory diseases, their families and their friends.
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