Joanne Gregory and Stephanie Ditcham
Velindre University NHS Trust with WeAreQR and Vale People First
This Bevan exemplar project examined alternative ways of delivering Transfusion based patient information using a co-productive approach.
The case for high quality, personalised health information is compelling, a view which is reflected in healthcare policy across the UK. As an intervention health information ensures that individuals are able to make informed decisions regarding their own care and aids in the informed consent process.
The Welsh Blood Service (WBS) are responsible for designing and producing transfusion based Patient Information Leaflets (PILs) for patients across Wales in the format of a text based leaflet. They are regularly reviewed for accuracy and content but have not significantly altered in their delivery or format since their introduction over a decade ago. This process is overseen by the Blood Health Team (BHT) whose remit includes managing the access, sharing and flow of information to hospitals in Wales.
A local review undertaken by the BHT in 2018 identified that the current leaflets were not being well utilised in practice or used effectively, this was in part due to the patient not fully understanding the content and not always being easily accessible at point of need. It is well recognised that there is a large proportion of the general population that have a limited health literacy with 1 in 5 adults finding it difficult to read at a 12 year old level or above, which brings into question the effectiveness of text based leaflets as a single health information resource.
The main aim of the project was to review current transfusion based patient information in particular the most utilised PIL ‘Will I need a blood transfusion?’ as a starting point with a longer term aim of developing a patient information strategy and a review of all our patient information. We wanted to ensure that we took a co-productive approach to producing clear, concise and understandable transfusion based information, tailored to the needs of patients in Wales which would include examining alternative formats and technology.
A secondary aim was to review accessibility to ensure we had a process in place whereby patient information could be available at the point of delivery/need to improve shared decision making and ensure a robust informed consent process for transfusion.
Due to the Covid-19 pandemic we were unable to follow our initial project plan of formulating public/patient and clinical forum groups. In order to meet these aims we had to adapt our approach. We decided to produce a survey to disseminate to members of the public and patients in Wales.
The main challenge to us was how we could generate interested parties who would provide us with a rich data source. We contacted engagement leads within local health boards to ask for their assistance in this task by disseminating our survey amongst their own established public/participation groups. We had an excellent response especially considering we were in a pandemic which demonstrates how people come together during times of adversity.
- 59% of respondents identified that they would like to receive information prior to consultation which will be explored further as part of our long term strategy
- 41% of respondents to the survey identified that they would like the information at point of need/delivery which reinforced our view of a necessity for more accessible patient information resources at the point of delivery/need, including the requirement for a more accessible webpage
- We considered developing an app to assist with accessibility issues but after researching options found that an instant access QR code would best suit our needs. This is linked to the patient information on our webpage and we intend on adding this to the All Wales Transfusion record once our website is updated.
- There was overwhelming support for an easy read version (72%) of our PIL and as a result we have partnered with ‘Vale People First’ to start working on producing an easy read version of the leaflet, whilst also considering alternative formats such as real life patient stories
- Through the project and this survey, the BHT have set up a patient/public participation group with an aim to reviewing the need for and the possible development of the remaining 12 WBS single resource leaflets over the next 12 months
- The results of the project will help to inform and develop a future patient information strategy
- Establish the other arm of the original project by working in collaboration with clinicians and transfusion professionals to develop a patient information strategy from a clinical perspective
- Develop a toolkit to strengthen the transfusion knowledge of clinical staff involved in the consent for transfusion process, encouraging shared decision making and increased confidence for both the patient and the clinician
- Integrate a QR code to the related transfusion documents such as the ‘All Wales Transfusion Record’ to allow information to be accessible at point of delivery/need
- Further explore accessibility issues within Health Boards with a potential to developing a more accessible BHT website, available to both clinical staff and patients for access to reliable information at point of need/delivery
- Reduce inappropriate variation by exploring alternative formats for information produced by credible sources in replacement of some WBS patient information
- Develop an ongoing review and evaluation process for patient information resources to ensure they remain current and valid
- Disseminate findings within the United Kingdom Blood Transfusion Network (UKBTN) to help inform development of UK wide transfusion based patient Information resources which is a recommendation of the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) patient consent for transfusion review. This could also reduce costs for all UK services in terms of staff resource and provide a standardised UK wide approach.
Our Exemplar Experience:
Bevan opens your eyes to what is available and achievable. We as a team found the process empowering and engaging.