The BMA Library organises the BMA patient information awards annually. Now into its 22nd year, the awards encourage excellence in the production and dissemination of accessible, well-designed and evidence-based patient information. The awards are supported by over 100 UK charities, patient groups and trust patient information services. One is struck by the diversity of topics. “Can’t pass it on” (Terence Higgins Trust), “Some mums & dads drink too much” (Nacoa), and “The Itchy-saurus“ (Rosie Wellesley and Pavilion Books Ltd) are all some of the examples from this year.
The shortlisted winners represent teams of people whose partnership skills are impressive. Some of the teams represent very small charities, such as the UK Paruresis Trust, run by a handful of volunteers with an annual income of less than £5K. Others represent well-known charities or organisations with substantial financial backing.
The provision of information from award winners addresses the needs and fears of patients when dealing with their particular condition or situation, and guides them as active participants in decisions about their care. They offer an effective means of two-way communication between authors and users. From the outset, patients are encouraged to participate in both the development and the evaluation of the resources. Some resources create a supportive community to reduce isolation through social media and/or blogging opportunities. To know that one is not alone is enough to motivate and reassure fellow-sufferers. This can contribute positively to self-care.
Guy’s and St Thomas’ NHS Foundation Trust won the patient information resource of the year award for their handbook, “Axial spondyloarthritis know-how (ASK) Self-Management Toolkit“. ASK is a single attendance education and exercise group programme at Guy’s and St Thomas’ for patients recently diagnosed with AS (axial spondyloarthritis). It is designed to support self-management long-term and includes the provision of the 140-page handbook. In 2017, a patient-centred redesign of the handbook in both paper and a novel digital format was undertaken.
It is acknowledged that self-help programmes have a high attrition rate.  The reasons for non-adherence include inaccessibility, dull or difficult to understand content, a non-inclusive approach and a failure to counteract barriers. The ASK handbook aims to address these issues by being more accessible to all in digital and paper format. To quote the assessor of this award, Peter Glennon, “the whole resource has a dynamic feel as it has evolved from patient input and feedback from the outset and gives the reader much opportunity to give feedback. Just as importantly, the reflective sections allow the patient to complete their own feedback loop which is important if they are to progress with the exercise and lifestyle modifications, rather than just read about them”. Barriers are addressed with practical advice based on psychosocial approaches.
Research into the ASK programme through interviews with participants identified the following as some of the benefits: early referral following diagnosis; the “group effect”; written information; focus on the emotional aspects of self-management; positive influence by patient experts in the group. Supported self-management such as this embodies part of the NHS Long Term Plan, potentially delivering cost savings to the NHS through reduced demand on services. A survey of UK adults, conducted by the Proprietary Association of Great Britain, found that the majority of people 92 percent (out of a total of 5,011 adults) feel it is important to take responsibility for their own health to ease the burden on the NHS. However, more than one third of people visit their GP for conditions they could treat at home. This mismatch may be addressed by self-management programmes similar to ASK, a resource which could potentially be rolled out to all patients in the UK with AS.
The BMA’s patient liaison group has increasingly participated in the judging process of the Patient Information Awards. This reflects the Patient Liaison Group’s mission to ensure that the patient voice is represented. The Patient Liaison Group maintains that “people should own and control their condition in order for them to determine how they want to live their life, rather than the condition dictating how their life is led.” This year, these awards will be renamed the “BMA PLG patient information awards.”
- From Qualitative Meta-Summary to Qualitative Meta-Synthesis: Introducing a New Situation-Specific Theory of Barriers and Facilitators for Self-Care in Patients With Heart Failure. Herber OR, Kastaun S, Wilm S, Barroso J: Qual Health Res. 2019 Jan;29(1):96-106
- Report: Self Care Nation: Self Care Attitudes and Behaviours in the UK: 2016 Nov www.pagb.co.uk