Focus Group Summary

You may have seen an invitation from the Evaluation, Evidence and Insight Team to attend focus groups discussing the implementation of the PIF Tick back in March.

The Patient Information Forum (PIF) have established a kitemark (the PIF Tick) which signifies quality, evidence-based information which has been designed alongside user input to be accessible and address user needs (pifonline.org.uk). As part of the implementation process, Penny Brohn UK consulted with service users as to how to include them in the production of quality healthcare information, including what information is produced, how it is distributed, and how feedback can be sought.

The focus groups began with an introduction of the PIF tick and addressed the questions of when information may have been or not been useful, how information should be provided, and how feedback about information could be given. We discussed how information can be difficult to take in when first diagnosed and how everyone has different needs in terms of information provision; what they need, when they need it, and in which format. People talked about how they may not have been in the right headspace to receive information, especially when first diagnosed, and the importance of knowing where to go when they felt better able to process information. Everyone talked about the value of the support received from Penny Brohn UK, although some of the information provided was sometimes irrelevant. We agreed there was a balance to be struck between providing necessary information and giving people tools to seek further support in order to personalise the advice to their individual needs. People talked about not being involved in the clinical decision-making process and then being expected to give an answer on their course of treatment without being given an opportunity to gather information and weigh up the options. We agreed that people needed to be supported to ask questions and be made aware of processes as much as possible, it is important to highlight that individual choice is just as important as the evidence-base.

Some of the things discussed in the group were:

• the use of infographics/images to make complicated information more manageable,
• use of accessible, non-medicalised language and terminology,
• the need to emphasise the individual, holistic approach,
• practical advice where necessary and appropriate,
• signposting to Penny Brohn UK services for more tailored practical advice.

Some information needs that the group members would like to see prioritised included:

• outline of the Holistic Needs Assessment (HNA),
• Scar Therapy resources,
• Social Prescribers – who are they and what do they do?
• Outlining the benefits of support groups,
• information on the Placebo Effect,
• sexual dysfunction and the associated psychological impacts.

We discussed how we could seek regular feedback from you about the resources we create, without having to have regular meetings. It was emphasised that the best way was to provide clearer avenues for feedback on the website and include information in the weekly mailer. We talked about introducing resources in support groups to generate feedback and provide an appropriate topic for discussion. So, please keep an eye out for more feedback requests on information we produce and summaries (like this one!) of feedback we have received and changes we intend to make.

We would love to hear your thoughts on how we can make Penny Brohn UK better for everyone!