*Citizens will be invited to help shape how the NHS uses their health data in a series of national outreach programmes running from January to March 2025.*
NHS England hopes to gather public views on digital and data transformation in the NHS and is setting aside £2m to fund the exercise. The public will be able to discuss and find out more about major programmes already outlined in the government’s Data Saves Lives strategy
to help provide patients with a simpler, more meaningful choice about their data. It will also allow the health and care system to meet its commitments in the Data Strategy to develop products with the involvement of the public.
Although this data flow sheet https://www.thelancet.com/journals/landig/article/PIIS2589-7500(23)00157-7/fulltext is a tremendous step forward, we still need information for the bottom half of the literacy pyramid - as described in the National American
literacy Survey: attached and a bit pasted below. The information for the bottom half of the literacy pyramid needs to be suitable for a reading age of about 8 years old.
*"**Readability data suggest that the average reading age of the UK population is **9 years** – that is, they have achieved the reading ability normally expected of a 9-year-old. The Guardian has a reading age of 14 and the Sun has a reading age of 8.”*
I believe that NHS England NHS England <https://www.england.nhs.uk/> need at least three levels of information – possibly 5. Otherwise the discussion will not be "democratic" as half of the population will not understand what is being debated. In fact almost every one knows what they are happy to share and what they are not happy to share but lack the language skills at present to explain their choices.
The bottom level should be mainly pictures which I am trying to capture in a book effort that I am making "Electronic Health records". This book which i will try to have published is full of photos and illustrations – one for almost every paragraph.
Barry Weiss writes in Health literacy and patient safety: Help patients understand (hhvna.com)
“There are many reasons why patients do not understand what clinicians tell them. Key among them is inadequate health literacy — an individual’s ability to read, understand and use healthcare information to make effective healthcare decisions and follow instructions for treatment. Clinicians can readily improve their patient’s understanding of healthcare information by adopting a more patient-friendly communication style.”
“The need for today’s patients to be health literate is greater than ever, because medical care has grown increasingly complex. We treat our patients with an ever-increasing array of medications, and we ask them to undertake more and more complicated self-care regimens.”
“Unfortunately, current data indicate that a large proportion of the US population — perhaps as many as half of American adults — lacks sufficient general literacy to effectively undertake and execute the medical treatments and preventive healthcare it needs. Inadequate health literacy affects all segments of the population, although it is more common in certain demographic groups, such as the elderly, the poor, members of minority groups, and recent immigrants to the United States.”
"Table 12. Six steps to improving interpersonal communication with patients
1. Slow down. Communication can be improved by speaking slowly, and by spending just a small amount of additional time with each patient. This will help foster a patient-centered approach to the clinician-patient interaction.
2. Use plain, nonmedical language. Explain things to patients like you would explain them to your grandmother
3. Show or draw pictures. Visual images can improve the patient’s recall of ideas.
4. Limit the amount of information provided— and repeat it. Information is best remembered when it is given in small pieces that are pertinent to the tasks at hand. Repetition further enhances recall.
5. Use the “teach-back” technique. Confirm that patients understand by asking them to repeat back your instructions.
6. Create a shame-free environment: Encourage questions. Make patients feel comfortable asking questions. Consider using the Ask-Me-3 program. Enlist the aid of others (patient’s family or friends) to promote understanding
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data. Email address: richardpeterfitton7 AT gmail.com