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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
[email protected]
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.
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
New paradigm
• Prevention better than cure:
– screening,
– lifestyle diseases
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.
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.
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
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
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
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)
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”.
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)”
Since health literacy is the problem
• Education of patients
• Better designed information
• The examples of
– PILS (The Patient Information Leaflets)
– and medication instructions
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!
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….
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?)
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
“Take one of
these tablets
tonight, Mr
Tate…
and one more if
you wake up in
the morning”
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.
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.
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..
“Making appropriate health
decisions”
• perceivable
• understandable
• But also relevant and meaningful for the
patient
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
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)
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?
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