Capacity, involving diverse users and accessibility were some of the core issues discussed by PIF members at our latest Health Information Challenges and Solutions Workshop.
The latest workshop had a different format with two main discussion sessions, plus the opportunity for members to vote on their top webinar topics and feedback on upcoming PIF guidance.
The first series of discussions focused on 5 core topics:
- Overcoming capacity challenges, including keeping up to date with reviews in a small team and setting realistic goals
- Recruiting diverse users, including working with people who are offline
- Working with medical reviewers, including where to find them
- Collecting feedback, including the best systems and engaging offline users
- Accessibility and prioritising alternative formats
Overcoming capacity challenges
Capacity is a core challenge for members working in both large and small organisations.
Those working in smaller organisations often lack someone to discuss ideas with.
However, teams of all sizes struggle to find time for new projects and improvements because there are always resources due for review.
There is also a need to manage expectations for what is achievable.
Members suggested the following solutions to help overcome these challenges:
- Having a list of core issues which the team takes time to discuss and prioritise each month
- Building a warm relationship with reviewers and other departments to ensure smooth working
- Being clear what resource reviews are trying to achieve
- Making use of PIF services like Ask the Membership and the Discussion Forum, particularly if you are working in a small organisation
Recruiting diverse users
Diverse user recruitment continues to be a challenge for information producers.
Members highlighted the need for ‘true lay reviews’ from people without a high level of knowledge about a condition. There is also the need to carry out both online and offline user involvement.
Delegates discussed how difficult it can be to ensure you are meeting the needs of seldom-heard communities when those communities are not widely represented at a staff level.
The following techniques were suggested to gain views from diverse users:
- Surveys, in particular asking people how they want to access information and which information they find most useful
- Making use of everyone within an organisation – volunteers may have lived experience, helpline staff have great insights into daily challenges
- Using settings like pharmacies to reach people who are not engaging with other healthcare settings
- Working with established community groups who have an in-depth understanding of any issues and barriers to engagement
Working with medical reviewers
With the health service under strain, delegates said it is increasingly difficult to recruit and retain medical reviewers.
Potential solutions include:
- Giving reviewers an incentive to engage, for example, certificates which can used to gain CPD points
- Attending conferences to reach new medical reviewers
- Establishing a bank of reviewers so you are not asking the same people to review multiple resources
- Making use of short online surveys to gather feedback on wider themes
- Having clearly established guidelines for what you want the reviewer to do
- Asking how reviewers want to give feedback – email, phone call, etc
- Establishing a voluntary medical panel to give people an ‘official status’ within the organisation
- Having a mailing list of reviewers to keep them up to date with what resources are coming up and the impact of their input
Collecting and implementing feedback
Members discussed the need to manage feedback effectively to avoid getting ‘stuck in a loop’ of revisions.
This includes thinking about the most useful ways to collect feedback, and who to collect it from, at different points in the development and review process.
Online tools like Maze can be a useful way to test user journeys for digital information.
Feedback should also be prioritised. For example, patient feedback should be given greater weight when considering tone and usability. Healthcare professional feedback should be prioritised for medical accuracy.
Which accessible formats to prioritise remains a key challenge for information producers, particularly those with limited resources.
While members continue to assess demand for translations, British Sign Language (BSL) and braille, there is also a need to ensure existing materials reach as many people as possible.
One potential solution is to create initial resources which are more likely to be accessible to a range of users than long sections of text.
Animations and short summaries of 3 to 5 bullet points, mirroring formats found on social media channels, were two of the suggestions put forward by members.
Those who want more detailed information could then be provided with links or QR codes.
Delegates also highlighted the importance of adding subtitles to all video and audio content, rather than relying on automatically generated subtitles on social media platforms like YouTube.
The second quickfire round of discussions covered 5 more key areas of concern raised by PIF members prior to the workshop:
- Working with freelancers, including where to find them and how to ensure consistency
- Use of icons and symbols – are there universally-recognised graphics which can be used in health information?
- Balancing demand for online and print information
- Considering health and digital literacy, including how to ensure use of plain language and clear risk communication
- Balancing conflicting feedback, including on potentially divisive issues like inclusive language
Working with freelancers
Members discussed how it can be time consuming to find reliable freelancers and familiarise them with house style, project scope etc.
Availability is another challenge. Freelancers with a strong background in health information are often in demand and may not be available within tight project timelines.
Potential solutions discussed by members included:
- Using freelancers for back-end work rather than public-facing materials
- Adding ‘key points’ lists to style guides which can be highlighted to freelancers
- Using freelancers who are members of PIF
- Using retainers to secure the time of freelancers if there is likely to be ongoing need
Icons and symbols
Delegates questioned whether there was a definitive, up-to-date guide to universally-recognised symbols which can be used in health information.
NHS Digital’s icon guidance includes a link to the retired icon library. However, members felt there is a need for more up-to-date resource.
There is demand for examples of best practice, use on social media and where they can add most value.
PIF will look at adding a webinar on this topic to our 2024 calendar of events.
Balancing print and digital
Digital content is typically cheaper than print and can be tailored to meet different user needs. It can also be easier to track who is engaging with digital resources.
However, members said a clear print strategy is a vital part of any digital inclusion strategy. For example, printable website pages are particularly important for support workers and family members.
Members highlighted the importance of understanding audience needs when prioritising either print or digital resources.
One member organisation is currently trialling black-and-white, print-friendly versions of website resources after healthcare professionals told them they did not want to print in colour.
Health and digital literacy
Ensuring content is easy to use and understand remains a key priority for PIF members. Techniques which members had found useful include:
- Tools to check accessibility and reading age
- Use of short bullet point lists to summarise key messages in a resource
- Using nurse specialists, who are likely to be familiar with the language used by patients, as reviewers
- Signposting to organisations who already have easy to use and understand information on related topics such as benefits
- Creating Easy Read resources
It can also be helpful to give medical reviewers an idea of what it feels like to have low health literacy.
For example, one member had run workshops with healthcare professionals during which they were shown complex text on non-familiar topics and asked to summarise it.
This helped them understand how patients can feel when confronted with new medical information.
Balancing conflicting feedback
Members highlighted the challenge of balancing conflicting feedback, both from different medical reviewers and from healthcare professionals and patients or carers.
Inclusive language can also be divisive during feedback. Members reported some users feeling ‘sidelined’ by inclusive language, the need to keep up with evolving language and difficulties when resources are interpreted.
Potential solutions include:
- Setting clear guidelines for what you want reviewers to comment on
- Prioritising feedback from different groups depending on the type of resource and level of review
- Using clinical nurse specialists to bridge gaps between patient experience and medical reviewers’ references to treatment guidelines
- Not making assumptions about preferred language
- Explaining why language is being used to reviewers
- Being willing to adapt, for example, BAME which was widely used until a couple of years ago is now considered reductive
- Incorporating equality and diversity into production processes and information reviews
Feedback on PIF resources
To make sure PIF is meeting our members’ needs, we asked workshop delegates to comment on several upcoming events and resources.
This included voting on potential topics for our 2024 webinar schedule.
We also asked delegates to feedback on upcoming health literacy and medical review posters and new training on facilitation and production processes.
We would like to thank delegates for their detailed feedback which will be incorporated as we continue to develop these resources.