The mismatch between information that people need and what we provide them with
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The document discusses the mismatch between the health information people need and what is currently provided. It notes that 43% of working adults do not understand health information and 61% do not understand information with numeracy elements. This can negatively impact health outcomes. The document provides examples of information misunderstandings and suggests using simple language, chunking information, and tools like The Information Standard quality mark to help close this mismatch. It emphasizes the importance of understanding users and involving them in developing easily understood information.
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The mismatch between information that people need and what we provide them with
- 1. #CILIPConf17 Sponsored by Media partners Organised by Health and Wellbeing Seminar
- 2. #CILIPConf17 Sponsored by Media partners Organised by The mismatch between information that people need and what we provide them with Jonathan Berry, National Policy Lead – Health Literacy, NHS England Jane Fox, Programme Manager – The Information Standard, NHS England
- 3. www.england.nhs.uk The Information Mismatch What people need and what we provide? Jonathan Berry and Jane Fox 6th July 2017
- 4. www.england.nhs.uk Aims • Explain what we mean by quality information and functional information • Context is health but this will resonate in all sectors PLUS we, or our family members, will all be users of the NHS at some point in our lives. • Offer some tools/resources to help drive up, or at least recognise, good quality and functionality of information • Have fun, learn about something new and understand why its important to us all. The Information Mismatch workshop
- 5. www.england.nhs.uk What is health Information? #1 Providing people with the information they need and in a format they find helpful is crucial. Whilst some will still expect paper-based written information, others, and especially adolescents and young adults, may prefer electronic information presented in various ways and on a variety of platforms. Our health service needs to respond to this and adapt to the changing expectations of the i-generation and generations of the future. Realising Realistic Medicine, 2015-16
- 6. www.england.nhs.uk “You should expect the doctor (or other health professional) to explore and understand what matters to you personally and what your goals are, to explain to you the possible treatments or interventions available with a realistic explanation of their potential benefits and risks for you as an individual, and to discuss the option and implications of doing nothing. You should expect to be given enough information and time to make up your mind. You should consider carefully the value to you of anything that is being proposed whether it be a treatment, consultation or diagnostic investigation and be prepared to offer challenge if you feel it appropriate.” Dr. Catherine Calderwood MA Cantab FRCOG FRCP Edin Chief Medical Officer for Scotland What is health information? #2
- 7. www.england.nhs.uk • 43% of working age adults do not understand the health information we produce. Rising to • 61% of working age adults do not understand the health information we produce if it has any element of numeracy. (Institute of Health Equity 2015) What is the problem?
- 8. www.england.nhs.uk • more likely to experience poor health outcomes • don’t turn up for appointments • don’t follow medication instructions correctly • are unable to explain their symptoms in detail • don’t understand how to use services appropriately • are unable to interpret diet and nutrition messages and package labelling • have lower response to healthy living campaigns Why is it a problem?
- 9. www.england.nhs.uk • We know that levels of functional health literacy are low in England. • Health information in current circulation is written at too complex a level • Health literacy has real effects on health and illness. • older people with low health literacy have higher mortality • people with low health literacy are more likely to have a long- term health condition and this is more likely to limit their activities • people with low health literacy rate their health as lower than people with higher health literacy levels; • people with low health literacy and lower educational levels are more likely to have unhealthy lifestyles. • Health literacy is a social determinant of health Why is it is important?
- 10. www.england.nhs.uk • Not realising that a positive test result can be a bad thing • Not understanding how chemotherapy will work • Not realising link between food and diabetes control • Spraying an asthma inhaler on the neck having been instructed to spray the inhaler on throat • Not realising that 5 a day is roughly five handfuls rather than five bags of fruit and vegetables Some real examples of mismatch:
- 11. www.england.nhs.uk • Read the hand out with your neighbour(s) • Consider with them: • did you understand the examples on first reading? • how many times did you read bits of it to make sense of it? • discuss together how you might change some of the content to make it easier to understand? Activity – Putting it simply?
- 12. www.england.nhs.uk There are a wide range of terms (health examples) that we use everyday that could be confusing for others: • Radiology or X-ray • Smoking Cessation or stop smoking • Diet or what you eat • Phlebotomist or the person who takes blood! What tools and techniques? Use simple language
- 13. www.england.nhs.uk What tools and techniques? Chunk & Check
- 14. www.england.nhs.uk • SMOG calculator - Simple Measure of Gobbledygook • Drivel Defence - software • Creating Health Information that works - PiF Toolkit • The Information Standard – more about this … What tools and techniques?
- 15. www.england.nhs.uk Health Education England are enabling Library and Knowledge Staff to.. Provide healthcare information to the public and patients • Building on their existing role in providing evidence for patient care as part of their service to healthcare staff • Utilising their skills in finding the evidence and appraising it • Training skills can be utilised to facilitate health literacy awareness • Guidance and ideas bank • Driver summaries • Guide to The Information Standard principles
- 16. www.england.nhs.uk The Information Standard • People are often keen to manage their own needs and conditions as much as possible. They should have access to the information they need to do this. • The Information Standard helps you to quickly identify reliable sources of quality evidence-based health and care information through an easily recognisable quality mark. • When you see The Information Standard quality mark on any materials, you can be assured that the organisation has undergone a rigorous assessment and that the health information they produce is high quality and people can use it.
- 17. www.england.nhs.uk • It helps you to have confidence in the health or care information you read and supports you to feel empowered to make the right choices, which can help you to: • gain a greater understanding of the healthcare choices available to you • make informed decisions about your health and care that are right for you and your family • have greater control over your care pathway • reduce health risks that may be caused by misinformation • By having confidence in the information available you can be much better placed to work with those that deliver your health and care needs and ensure you receive the treatment and care that is right for you. The Information Standard
- 18. www.england.nhs.uk 1. Information Production – you have a defined and documented process for producing high quality information 2. Evidence Sources – you only use current, relevant and trustworthy evidence sources 3. User understanding and involvement – you understand your users and you user-test your information End Product – you confirm that your finished information product has been developed following your process and is of good quality 4. Feedback – you manage comments/complaints/incidents appropriately 5. Review – you review your products and your process on a planned and regular basis TIS – Principles – best practice Beyond health…
- 19. www.england.nhs.uk National Demonstrator Site in East Midlands: • Health Literacy Awareness Training delivered and evaluated to staff in different settings • Aim: to increase health literacy awareness and skills and improve practice / delivery to service users • Participants came from many organisations, the main ones being Public Health, Voluntary Sector, NHS (GPs and hospital staff), Fire Service, Social Services, Library Services, Commissioning and Education Beyond health…
- 20. www.england.nhs.uk • In pairs – one person please quickly read the hand out • Try to describe the risks to your partner without using any numbers? • What was hard about doing this? • How easy was it for the other person to understand? Activity – 2
- 21. www.england.nhs.uk • Our role as producers of or sign posters to information is to help the public to get what they need in a form that they can use and understand • Our role as members of the public is to know what to look for to identify good quality health information • Our role as knowledge , information and library staff is to be aware of people’s needs and influence others to help meet those needs • Knowing how to recognise good quality information can be challenging, when there is so much information publicly available of such variable quality. Summary/conclusion
- 22. www.england.nhs.uk • Health Literacy Curated Collection available at www.healthliteracy.org.uk • www.healthliteracyplace.org.uk (Scotland) • www.england.nhs.uk/TIS • SMOG http://www.learningandwork.org.uk/misc/SMOG- calculator/smogcalc.php?redirectedfrom=niace#userg uide • Patient Information Forum - https://www.pifonline.org.uk/toolkit/ Useful websites/more information:
Editor's Notes
- Jonathan Berry – NHS England Personalisation and Control Lead Jane Fox – Programme Manager – The Information Standard
- Functional literacy = level 1 and above Level 1 = GCSE grades D-G. Adults with skills below this level may not be able to read timetables or letters containing words with more than one syllable 15% (=7.45 million people) of the population are below this level Entry level 1 = expected national school curriculum level for 5-7 yrs. Adults below Entry Level 1 may not be able to write short messages to family or select floor numbers in lifts 5% (=2.5 million people) are at this level 2011 Skills for Life Survey: Headline findings. Department of Business Innovation and Skills Functional numeracy = entry level 3 and above Entry Level 3 = expected national school curriculum level for ages 9-11. Adults with skills below this level may not be able to understand price labels on pre-packaged food or pay household bills 23.7% of the population are below this level 6.8% are at entry level 1 or below (national school curriculum for attainment at age 5-7 yrs) 2011 Skills for Life Survey: Headline findings. Department of Business Innovation and Skills
- In this approach you break down the information that you are giving into small sections/chunks and after each chunk you check for understanding before moving on. Don’t wait until the end of a potentially long discussion where you are providing lots of information to check for understanding.
- The SMOG grade is a measure of readability that estimates the years of education needed to understand a piece of writing. SMOG is the acronym derived from Simple Measure of Gobbledygook. It is widely used, particularly for checking health messages. http://www.learningandwork.org.uk/misc/SMOG-calculator/smogcalc.php?redirectedfrom=niace#userguide Drivel Defence - A software package that will help you to check the use of plain English in reports, letters and websites Creating health information that works - Toolkit looking at how to communicate health information so that people understand it (PIF) The Information Standard - The Information Standard is a certification programme for all organisations producing evidence-based health and care information for the public. Any organisation achieving The Information Standard has undergone a rigorous assessment of the information production process to check ensure that the information they produce is high quality, evidence based, balanced, user-led, clear and accurate. The Information Standard helps people to quickly identify reliable sources of quality evidence-based health and care information through an easily recognisable quality mark.
- Patients are being encouraged to self-manage, share decision-making and be partners in their own care . Health Education England through its work associated with Knowledge for Healthcare are enabling Library and Knowledge Services (LKS) staff to help throughout the patient journey. NHS LKS are used to playing a key role in providing evidence for patient care as part of our service to healthcare staff. They are already partners in patient care. NHS LKS can also utilise their training skills to facilitate health literacy awareness for all healthcare professionals. Guidance has been created to support LKS Steff to get involved with patient and public information and an Ideas Bank has been developed to share and publish what is already happening around England to support the PPI agenda. More recently the key drivers for patient information have been identified and to support involvement of Library services in patient and public information projects such as Care Quality Commission regulations 9 and 11 about person centred care and consent In partnership work has been done regarding the Information Standard – How Library staff can use the principles of TIS to help their organisation’s apply for the standard or their role in creating high quality patient information. The evidence shows that providing high quality health information is beneficial. It has a positive impact on service utilization and health costs, patients’ experience of healthcare and patients’ health behaviour and status. Patient engagement is vital to help people manage their health, make informed decisions about their healthcare, and mitigate financial pressure on the health service. So in the current crisis patient information and self management may be one of the keys to reducing demand.
- Information Production - This principle is designed to demonstrate that your organisation has a process in place to produce good quality health and care information in a consistent manner. Evidence Sources – This principle is designed to ensure that where evidence is used is it relevant and from a recognised source. You need to demonstrate that you have a process in place for defining and then prioritising which evidence you use. Where evidence is used it must: Come from a recognised source that you organisation has approved Be accurately referenced Be balanced to reflect the weight and quality of evidence available and clearly identify any uncertainties and unknowns The final product must be peer reviewed by a suitable person to confirm the context, content and quality of the evidence User understanding and involvement This principle is designed to ensure that health and care information that is being produced has the needs and views of the people using it at its heart. It is based on two premises: You need to be clear about who the information is designed for, why it is required and that you understand their needs. Health and care information needs to reflect the needs and views of those using it and they are the best people to ensure this. This user involvement should be representative of the target audience and involve an appropriate number of such people (dependent on the product and the target audience size) End Product – this principle is designed to ensure a final review process for each and every information product to ensure that it has been developed following your process so that it complies with the requirements and key elements of the Information Standard and meets recognised best practice. Feedback – this principle is designed to ensure that all feedback is dealt with appropriately especially concerning errors, omissions or points for clarification. Your process should ensure that feedback is recorded, actioned and resolved as appropriate, especially if an amendment to your information product is required. Review – this principle is designed to ensure that your information products are reviewed on a planned and regular basis, within a timeframe appropriate to the type of information, not normally less than every three years.
- Use the PDA printed out??? Or just summarise some facts as above? Prostate Specific Antigen (PSA) test: Whether you decide to have a test will depend on many things, including whether there is a history of prostate cancer in your family, whether you want to know about a raised risk of cancer, and what you think you would do if you had a result that showed a raised chance of prostate cancer. On average, men who have a PSA test do not live longer or shorter lives than men who do not have a test. More men who have a PSA test find out they have prostate cancer than those who don’t have a test. Between 6 and 7 in 100 men who have a PSA test are diagnosed with prostate cancer. Between 4 and 5 in 100 men who don't have a PSA test are diagnosed with prostate cancer. Prostate cancer is diagnosed six to eight years earlier in men who have a PSA test. If you don't have the PSA test, you are not likely to be diagnosed and treated early. If you don't have a PSA test, you won’t get a false positive result. The PSA test can miss cases of cancer (under diagnose cancer). Around 15 in 100 men who have a normal PSA level when they are tested will have prostate cancer. [23] Doctors call this a false negative result. In one large group of men, between 16 and 17 in 100 men who had a PSA test had a result showing a raised PSA level. The options are: Have a blood test for prostate specific antigen. Do not have a blood test for prostate specific antigen.