The medically literate patient: the need for a Design for All approach.

1. The medically literate patient: the need for a Design for All approach. Jenny and John Darzentas University of the Aegean Department of Product and Systems Design Engineering Greece jennyd@aegean.gr

2. New paradigm of western medicine • From curing disease to maintenance • the increase in the general population of chronic conditions such as hyptertension, diabetes, obesity, thyroid disorders and various conditions that are seen as part of aging, such as weakening muscles and lessening of cognitive acuity.

3. New paradigm • From paternalism to partnership • Patients and carers and team of health professionals share the responsibilities • Especially true in chronic disease, in disability, and in cancer care

4. New paradigm • Prevention better than cure: • screening, • lifestyle diseases

5. The role of knowledge • A major protagonist of this paradigm is knowledge: • That is, patients become ‘medically literate’: • able to read and understand information relating to their condition; • able to research new developments in treatment options; • and are vigilant for any changes in their state of health that might signal some kind of deterioration or complication.

6. Medical information -availability • Already vast amounts of medically related information are widely available for the lay person. This is available • in various forms (telephone help lines, online information), • from various sources, e.g.: ‘consumer health information’ from public authorities; information about conditions sponsored by pharmaceutical companies; and the wide-ranging output of support groups. • The latter include those groups that offer information written by medical professionals as well as more informal communities of patients and carers sharing their personal experiences of living with chronic disease.

8. Is this reality? • In some cases yes, • But for some ..No! • Not only do people not surf the web getting to grips with their condition, • they do not understand information in printed leaflets, • and even more basically, they have problems following instructions about medications. • This has been diagnosed as health literacy deficiency

9. Low health literacy in patients • Is linked to higher levels of hospitalization and use of expensive emergency services, • is a stronger indicator of a person’s health than age, income, employment status, education level or race” JAMA 1999

10. Attitudes and euphemisms: the notion of blame • In the past medical profession was more blunt, the tone of literature put the blame firmly on the shoulders of the patient. • Quote from a paper from 1976 • “asthmatic patients seem either not to read, or to be unable to follow the instructions supplied with the bronchodilator metered aerosols” Orehek et a. Patient Error in use of bronchodilator metered aerosols, British Medical Journal 10th January 1976

11. Dire consequences of being classified low level literacy… • patients with low literacy levels not good candidates for organ transplants because they will not be able to understand and follow the demanding outpatient medication regime (10 different types of medicine)

12. A definition of Health Literacy • US’s Healthy People 2010 Policy document. • “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”.

13. Health literacy requires other literacies • “Visually literate (able to understand graphics or other visual information) • Computer literate: (able to operate a computer) • Information literate (able to obtain and apply relevant information) • Numerically or computationally literate (able to calculate or reason numercally)”

14. Since health literacy is the problem • Education of patients • Better designed information • The examples of • PILS (The Patient Information Leaflets) • and medication instructions

15. Patient Information Leaflets (PILS) • research that examined the initiation and ecology of PILS (Patient information leaflets) across a range of health provider organisations in Israel • found that they get written to serve needs of stakeholders other than patients and carers (publicity, commercial interest, internal reasons…) • Written by medical experts, not following guidelines (e.g Plain language) • Content: an explanation of physiological functions, and corrective actions • Varied in tone: Too brutal –too optimistic • Language meant couldn’t apply readability testing!

16. Other PILS Studies • PIls examined by content category (screening for newborns, information on diabetes management, diagnosing scoliosis, etc) • Unnecessarily complex • Written at a levels that exceed those of the average U.S. adult • Content not accurate, not complete, not pertinent • Content not structured • etc….

17. Medication errors by patients • Immense amount of work on medication and instructions for use • (Partly understandable because non adherence costs to pharmaceutical companies, so they fund research ) • Findings are alarming: • Approximately half of primary care patients misunderstand common instructions and warning placed on prescription container labels (2006) • The instructions are not meaningful. • Patients can read but cannot understand • “Take two tablets twice daily for seven days” (how many a day?)

18. Health literacy- the culprit? • Is it really to blame? • Isn’t it the job of the experts to explain in a way that is meaningful and relevant to the patient • Are physicians bad communicators? • Much angst about this in medical community resulting in patient based medicine, narrative medicine, etc

19. “Take one of these tablets tonight, Mr Tate… and one more if you wake up in the morning”

20. Medical Information Overload • Are physicians knowledgeable enough? (teams of specialists working in uneasy collaborations with patients as the glue) • Work by Murray et al. (2006) found that although people looked up information, they took that information to their doctors to seek their opinion on what they had found and read.

21. Design for all / accessibility contributions? • This problem of content provision has stayed a lot in the domain of health, and been framed in terms of literacy • And been advocated by stakeholders physicians, healthcare providers, medical insurance, pharmaceutical companies etc. • Information designers have worked on health communication messages and PILS (Usability studies) • We think there is enough understanding about particular groups, to try to shape the information to respond to their needs for information • This information may not be just for the patient, but for his immediate family, carer, significant other.

22. What we haven’t found • Serious suggestions on tailoring content • At very least making assumptions about target audience • Their cognitive abilities • Their context of use • One suggestion that since the elderly were the demographic that were the most expensive in terms of medical care, and their numbers are rising, information should be addressed to them..

23. “Making appropriate health decisions” • perceivable • understandable • But also relevant and meaningful for the patient

24. Making appropriate health decisions with meaningful relevant information • Treatment of prostate cancer has four main options: each with consequences for mortality and quality of life. Not the health provider’s decision. Argument that patient needs a trusted source of information tailored to his individual needs • Reconstructive plastic surgery: a series of operations, consent forms required for each operation. Patient could be helped if the information about these procedures, their sequencing and their consequences are shaped to their set of circumstances

25. Requirements • That scenario requires • Access to patient records • Some system (human or computer) to make up tailored content (from pre-existing libraries) • The interest on the part of content suppliers • (There are physicians who like to give printed information, or direct their patients to web sites with information, but they still need to mediate the information)

26. Text based? Multimedia? • The tendency will be to move from text based (with graphics) to a multimedia.. • To get away from literacy problem that is still perceived as being text based problem • We will end up with loads of inaccessible unusable and essentially meaningless content • Time to design this content?

27. Importance of this work • Altering perceptions of illness, from helplessness and dependency to control and involvement • Studies have shown that patients who participate positively in health decision making have better outcomes