We are celebrating #HealthLiteracyMonth here at A Picture of Health.
‘Health literacy’ is an integral part of health communication. It is defined by the World Health Organisation as the ability to ‘access, understand, appraise and use information and services in ways that promote and maintain good health and well being’. A person’s health literacy can be linked to socio-economic factors and existing inequalities. However, someone with good general literacy may have poorer health literacy when under stress, for example when receiving a medical diagnosis. Health literacy levels fluctuate depending on circumstances, therefore it is important not to make assumptions about a person’s health literacy level.
‘User involvement’ is the process of engaging with and involving end users in the design and evaluation of a product or service. The process provides insight into the experiences, thoughts and expertise of intended users, so that the final product or service can meet user need and add value. It can take many forms and may be facilitated through focus groups, surveys, individual interviews or ad-hoc feedback.
One tool that organisations use when considering health literacy is user involvement. It is a great litmus test, showing whether information meets user needs and how easy information is to understand.
User involvement: then and now
User involvement rarely played a part within the health sector before the 1970’s. Since then, public health failings highlighted in the media, policies resulting from pro-democracy and changes in legislation, have paved the way for increased involvement of patients and the public. Our personal involvement with health information began over 15 years ago at a company formed in response to Article 59(3) of Directive 2001/83/EC. It states, ‘The package leaflet shall reflect the results of consultations with target patient groups to ensure that it is legible, clear and easy to use.’ Although, not without its limitations, the method of readability testing (also called user testing) of medicine leaflets with the general public, forces pharmaceutical companies to consider whether their information is fit for purpose.
In 2017, with a realisation of the cost and social impacts of low health literacy, Health Education England and the Community Health and Learning Foundation developed a ‘Health Literacy Toolkit’ (more recently updated in 2023). Providing techniques and approaches that NHS staff, charities and others can use to support people with low health literacy. The Toolkit recommends ‘user testing of all written information to check that the style is appropriate’.
Shortly after, Covid-19 exposed the challenges of communicating health information in a way that everyone can understand. Low health literacy levels and health inequalities were put into the spotlight. The impact of disinformation and misinformation, fuelled by digital social platforms became apparent. The need to respond at speed and arguably, the way in which the pandemic was managed, meant patient and public involvement within medical research and service provision was put on hold.
UK government responses included the Medicines and Healthcare Product’s Regulatory Agency (MHRA) ‘Patient Involvement Strategy 2021-2025’. However, it remains to be seen how far such strategies will go in meeting their objectives and the tangible impact they will have.
Meanwhile, non-profit organisations such as the Patient Information Forum (PIF) promote and offer advice on the creation of clear, evidence-based information. Their PIF TICK scheme allows certified members to bear the PIF TICK logo, a quality mark of trusted health information. User involvement is one of their 10 criteria.
Looking back shows, although complex and not without challenges, there have been some positive steps towards acknowledging and addressing health literacy, as a component of health inequality, with user involvement playing a valuable part.
Why should I engage with users?
There are many benefits of involving users in the production and review of health information. Here are a few:
- Users will tell you what they actually want and need. This benefits your organisation since you funnel resources into projects with meaningful impact and outcomes. It also benefits the user since they acquire valuable information.
- From speaking with users, you may discover that a different organisation is already doing a great job of meeting a particular need. Rather than spending time re-inventing the wheel, you can signpost to existing information.
- It helps you think about the purpose of a resource from the user perspective, as well as ways in which you might be able to measure its impact and outcomes.
- Asking users to review information is your opportunity to check whether the intended audience can understand the information. Are you writing and presenting information in a way that people with low health literacy levels can understand? To put this into perspective, research shows that in the UK:
- More than 4 in 10 adults struggle to understand health information written for the public
- 7.1 million adults read at, or below, the level of an average 9 year old
- The inability to understand health information has been linked to a greater risk of poor general health, lower medication adherence, increased hospital admissions and a reduced life expectancy. This highlights the importance of writing information targeted at the average reading age of a 9 year old.
- Involving users highlights accessibility issues. This is important because in the UK, there are an estimated 16 million disabled people. Digital accessibility should also be considered from a legal perspective: The Equality Act 2010 includes reference to discrimination by UK goods and service providers with the requirement of websites and apps being accessible to all users, regardless of their abilities. The Accessibility Regulations 2018 provide an extension of this for the public sector. The ‘Web Content Accessibility Guidelines (WCAG) 2.2’ form part of these.
- Users give a fresh perspective. Valuable insights and viewpoints can be gained from people outside of your team or organisation that would otherwise be overlooked.
- Feedback drives continuous improvement of information. We know that producing and developing information is an iterative process and it also evolves as the health landscape changes.
When should I involve users?
There are different methods and levels to consider for user involvement. From full co-production to approaches that are less resource and cost intensive. As well as considering the most appropriate approach, the stage in the production process that you gain insight is important. Based on experience, we consider user involvement at the following stages:
Before production
If you are considering adding a new resource to your portfolio, it is important to get user input regarding its need. What you think people need and what they actually need may differ.
Input at this stage can also help you identify and define:
- The aims and purpose of the information, including the desired impact and outcomes
- Who your target audience is, including their health literacy, digital and accessibility needs
- The preferred format of the information.
During production
Whether you hold a focus group, conduct a survey or issue a questionnaire, feedback on the content and design of your draft health information is crucial. It is your opportunity to check if information is understood, inclusive, clear and accessible.
In particular:
- If written content, images and pictograms are understood
- If content is appropriate and inclusive
- If the user can access and navigate the information
- If anything important is missing from the information.
A Picture of Health Ltd can conduct surveys, interviews and focus groups on your behalf and answer key questions about the accessibility, readability and usability of your information. Find out more about our services on our website.
Following production
Following publication, you should ideally invite, record and consider positive and negative feedback from users. This allows for learnings and improvements to your portfolio. It is great for morale to hear about the positive impact information is having. Most importantly, feedback can be used as a key performance indicator of a resource and demonstrate its impact on users.
Who should I involve?
The people you choose to engage with will depend on several factors. For example, the intended audience, the type of information and user involvement completed to date.
The people you select to involve should represent your intended audience. This may include several user groups, such as healthcare professionals, patients, carers, or other service users.
It is best practice to include a diverse range of people when seeking user input. Consideration of sex, age, educational level, background, ethnicity and health conditions are some of the demographics to be considered.
Engaging diverse user groups
It can be challenging to involve a range of users who represent the diversity of your intended audience. Below are some tips to support you in this process:
- Utilise your existing service user group and supporters. There may be people within your network who would like to get involved but are unaware of the opportunity.
- Reach out to other organisations who may be able to put you in touch with the diverse groups you are looking for. For example, a local community organisation or charitable organisation representing a specific demographic.
- Seek support from external agencies. Consultancies such as our own and organisations like PIF offer guidance and services to support you.
- Consider whether it is appropriate to include naïve users, i.e. people who have no experience of the subject matter. This can widen the pool of users, making it easier to include diverse groups.
- If you decide it is appropriate to include naïve users, there may be people within your own network of family and friends willing to get involved. However, make sure you check your organisations’ policies for any potential conflicts of interest.
If you need support recruiting users who reflect your target audience or engaging with people from diverse backgrounds, contact us.
Conclusion
User involvement is a useful method in an organisations toolkit, which helps assess whether information is meeting the needs of the intended user and can be understood. We all have a role to play in promoting and facilitating the involvement of users within the creation of our information.
References
European Commission. Guideline on the readability of the labelling and package leaflet of medicinal products for human use. Revision 1, 12 January 2009. Available at: https://health.ec.europa.eu/document/download/d8612682-ad17-40e3-8130-23395ec80380_en (Accessed: 21 October 2024)
Ferreira Caceres, M, Sosa, J, Lawrence, J, et al. (2022) ‘The impact of misinformation on the COVID-19 pandemic’ AIMS Public Health 9(2): 262–277. Available at: doi: 10.3934/publichealth.2022018
NHS (2023) Content Guide, Health literacy. Available at: https://service-manual.nhs.uk/content/health-literacy (Accessed: 21 October 2024)
NHS England. Workforce, training and education. Improving health literacy. Available at: https://www.hee.nhs.uk/our-work/knowledge-library-services/improving-health-literacy (Accessed: 21 October 2024)
NIHR Evidence (2022) Health information: are you getting your message across? Available at: doi: 10.3310/nihrevidence_51109
Ocloo, J, Garfield, S, Dawson, S and Dean Franklin, B (2017) ‘Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a protocol for a systematic review of reviews’, BMJ Open, 7 (10). Available at: doi 10.1136/bmjopen-2017-018426
Office for Health Improvement & Disparities (2022) Guidance, Health disparities and health inequalities: applying All Our Health. Available at: https://www.gov.uk/government/publications/health-disparities-and-health-inequalities-applying-all-our-health/ (Accessed: 21 October 2024)
Scope UK. Disability facts and figures. Available at: https://www.scope.org.uk/media/disability-facts-figures (Accessed 21 October 2024)
The Health Foundation (2022) The continuing impact of COVID-19 on health and inequalities. A year on from our COVID-19 impact inquiry. Available at: https://www.health.org.uk/publications/long-reads/the-continuing-impact-of-covid-19-on-health-and-inequalities (Accessed: 21 October 2024)
World Health Organisation (2024) Health Literacy. Available at: https://www.who.int/news-room/fact-sheets/detail/health-literacy (Accessed 21 October 2024)