Consumer Health Informatics

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Consumer Health Informatics Alexa T.
McCray Harvard Medical School Boston,
Massachusetts alexa_mccray_at_hms.harvard.edu BioMed
ical Informatics A Course for Health
Professionals
September 27, 2006
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R D while at NLM
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Navigating Todays Healthcare System

• Patients need to interact in a broad range of
  health care settings and with varying types of
  information
• Doctors offices
• Clinics, hospitals
• Therapeutic instructions
• Prescriptions
• Insurance forms
• Informed consent

Parker RM. Health literacy A challenge for
American patients and their health care
providers. Health Promotion International. 2000
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Research Questions

• Given that patients are increasingly being asked
  to make more decisions and to take greater
  responsibility for their own and their familys
  health care
• What types of information are readily available?
• How do patients and family members make decisions
  based on the available evidence?
• What are the barriers faced in accessing,
  understanding, integrating, and acting on the
  evidence?
• What types of interventions have a positive
  impact on the decision making process?

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The Rise of the Active Consumer

• Once passive recipients of medical care,
  patients are increasingly regarded as active
  consumers (and potential critics) with the
  right to certain standards of service, including
  the right to full information, to be treated with
  respect and to be actively involved in
  decision-making about treatment.

Mead N, Bower P. Patient-centredness a
conceptual framework and review of the empirical
literature. Social Science Medicine. 2000
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Online Health Information

• Tens of thousands of web sites disseminate health
  information
• Tens of millions of people seek health
  information online
• Convenience (24 hour access)
• Anonymity
• Diversity of information sources
• Cline RJW, Haynes KM. Consumer
  health information
• seeking on the Internet. Health
  Educ Res. 2001671-92.

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Searching Health Information on the Internet

• Well (60)
• Episodic searching about short term acute
  illness, pregnancy, prevention, anti-aging,
  health care providers
• Newly diagnosed (5)
• Intensive searching for specific information
  about their condition, unlimited by geography
• Chronically ill (35)
• Regular searching, little site hopping

Health e-People The Online Consumer Experience
20024
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Assessment of Credibility of Online Health
Information

• 86 worry about unreliable information
• Only 24 consulted privacy policies
• 58 checked to see who was providing the
  information
• 54 think most information is credible
• Nearly 42 of consumers view online health
  information as credible based on some aspect of a
  sites visual design (Stanford University study)
• Pew Internet American
  Life Project.
• The online health care
  revolution. 20006.

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DISCERN Tool for Evaluating Consumer Health
Information

• Part 1 Is the publication reliable?
• Are the aims clear?
• Does it achieve its aims?
• Is it relevant?
• What sources were used?
• Is it up to date?
• Is it balanced and unbiased?
• Are there additional sources listed?
• Does it refer to areas of uncertainty?

http//www.discern.org.uk/
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• Part 2 What is the quality of the information?
• Does it describe
• How each treatment works?
• The benefits of the treatment?
• The risks of the treatment?
• What would happen if no treatment is used?
• How the treatment affects quality of life?
• That there may be more than one choice?
• Does it provide support for overall
  decision-making?
• Part 3 Overall rating of the publication based
  on answers to all questions

http//www.discern.org.uk/
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MEDLINEPlus Quality Guidelines

• Quality, authority, accuracy of content
• Accurate, science-based information
• Established respectable, dependable source
• Information appropriate to audience level
• Primary purpose is educational
• Goal is not to sell a product
• Availability and maintenance of site
• Information current and consistently available
• Special features
• Special features such as diagrams, glossary, etc.
• Content accessible to persons with disabilities

http//www.nlm.nih.gov/medlineplus/criteria.html
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Patient/Physician Partnership

• Survey of Internet literate physicians in the UK
• Experience of patient Internet use
• Overall, benefits outweighed problems
• Internet valuable for informing, advising,
  providing support
• Consultations were longer when online information
  was used
• Potts HWW, Wyatt JC. Survey of
  doctors experience
• of patients using the Internet.
  JMIR 200235.

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Patient Record System (for patients!) at Beth
Israel Deaconess Medical Center
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(No Transcript)
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Health Literacy

• Health literacy represents the cognitive and
  social skills which determine the motivation and
  ability of individuals to gain access to,
  understand, and use information in ways which
  promote and maintain good health. (WH0, 1998)
• IOM study (2004)
• Health literacy is a convergence of education,
  health services, and social and cultural factors
• Even very literate people may have trouble
  obtaining, understanding, and using health
  information

Health Literacy A prescription to end the
confusion. IOM 2004
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National Adult Literacy Survey (1993)

• Surveyed 26,000 adults
• Tested in three areas
• Prose (newspaper articles, narratives)
• Documents (bus schedules, coupons, graphs)
• Quantitative (perform arithmetic operations)

Kirsch I et al. Adult Literacy in America. Dept
of Education. 1993
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National Adult Literacy Survey (1993)

• Results
• 46-51 of the population, representing about 90
  million adults, have extremely limited literacy
  skills
• Older adults and minority groups at the lower
  ends of the literacy scale
• Literacy depends not only on readability but also
  on cognitive processing tasks

Kirsch I et al. Adult Literacy in America. Dept
of Education. 1993
Rudd et al. Literacy and Health in America. 2004
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National Assessment of Adult Literacy (2003)
Below Basic
Basic
Intermediate
Proficient
http//nces.ed.gov/naal/
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The Health Literacy of Americas Adults (2003)

• Sample Tasks
• Circle date of appointment on appointment slip
  (101)
• Explain why its difficult for people to know if
  they have a specific condition based on
  information in a one page article about the
  condition (201)
• Determine a healthy weight range for a person of
  a specified height based on a graph that relates
  height and weight to body mass index ( 290)
• Calculate an employees share of health
  insureance costs for a year using a table that
  shows how the cost varies depending on income and
  family size (382)

Below Basic
Basic
Intermediate

Proficient
http//nces.ed.gov/pubsearch/pubsinfo.asp?pubid20
06483
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Inadequate Health Literacy

• Patients at two public hospitals did not have
  adequate functional health literacy
• 42 could not understand directions for taking
  medication on an empty stomach
• 26 could not understand information on an
  appointment slip
• 60 could not understand a standard informed
  consent form

Williams MV et al. Inadequate functional health
literacy among patients at two public hospitals.
JAMA 1995
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Low Health Literacy

• Negatively influences health outcomes
• Worse health status
• Less understanding of
• Medical conditions
• Treatments
• Higher risk of hospitalization
• Contributes to health disparities
• 30 of patients in oncology clinical trials
  believed their treatment had already been proved
  most effective

Schillinger D et al. Association of health
literacy with diabetes outcomes. JAMA 2002
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Health Literacy Screening

• REALM (Rapid Estimate of Adult Literacy in
  Medicine)
• Reading of list of medical words with increasing
  level of difficulty
• fat, flu, asthma miscarriage, nutrition,
  nausea, inflammatory, antibiotics, osteoporosis
• TOFHLA (Test of Functional Health Literacy in
  Adults)
• Reading comprehension
• Numerical ability
• NVS (The Newest Vital Sign)
• Nutrition label from an ice cream container
• 6 comprehension questions (numeracy reading)

Parker RM et al. The test of functional health
literacy in adults. J Gen Intern Med 1995
Davis TC et al. Rapid assessment of literacy
levels of adult primary care patients. Fam Med
1991
Weiss BD et al. Quick Assessment of Literacy in
Primary Care The Newest Vital Sign. Annals of
Family Medicine 2005
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Readability of Health Materials on the Web

• Studies of academic, commercial, government,
  professional society sites
• Range of topics
• Family medicine, pediatrics, obstetrics, internal
  medicine, psychiatry
• Results
• Median grade level 10th grade
• Range 6th collegiate

Berland GK et al. Health information on the
Internet. JAMA 2001
Graber MA et al. Readability levels of patient
education material on the World Wide Web. J Fam
Pract 1999
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Readability Formulas

• Developed for assessing grade level
• Word familiarity, words per sentence
• Dale-Chall Formula (requires word lists)
• Syllables per word
• McLaughlin SMOG Grading Formula
• Words per sentence, syllables per words
• Fry Readability Graph, Gunning FOG Index,
  Flesch-Kincaid Formula, Flesch Reading Ease
• Used for assessing health materials none has
  been customized for the health domain

Vivian AS, Robertson EJ. Readability of patient
education materials. Clin Ther 1980
Ley P, Florio T. The use of readability formulas
in health care. Psychology, Health Medicine
1996
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Methods for Enhancing Readability

• Write material at 5th-8th grade level
• Define purpose present essential information
  first
• Short, simple sentences active voice
• Question/answer format
• Progress from simple to more complex ideas
• Include glossaries for technical terminology

Bernier MJ. Establishing a scale for evaluating
quality in printed education materials. Patient
Educ Couns. 1996
Mayeaux EJ et al. Improving patient education for
patients with low literacy skills. Am Fam
Physician 1996
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Presentation of Information

• Simple and uncluttered layout
• Meaningful, appropriate graphics
• Recall and comprehension improved when
  information has following characteristics
• Specificity to the patient
• Clarity of content
• Positive manner of delivery
• Relevance to patient concerns

Auerbach SM. Should patients have control over
their own health care? Ann Behav Med 2000
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Portion of an Informed Consent Document
Women are being invited to participate in a
research investigation to determine the efficacy
of two methods of assigning pregnant women in
their smoking cessation attempts. A comparison
of the effectiveness of educational media in
combination with a counseling intervention method
on smoking habits is being examined. It cannot be
guaranteed that women may personally benefit from
this investigation, but in some instances, the
information gained might be beneficial to other
individuals. It is important to recognize that
participation in this study is entirely
voluntary. Individuals may withdraw from the
investigation at any time without penalty or loss
of benefits to which they are otherwise entitled.
Such withdrawal will not compromise nor interfere
with the individuals ability to receive medical
care at this institution.
Doak LG et al. Strategies to improve cancer
education materials. Patient Educ. 1996
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Revised Document
You are asked to take part in a study that looks
at ways to help pregnant women stop smoking. We
want to find out if a booklet and a videotape can
help women stop smoking. We also want to find out
how nurses can help you stop smoking. We cannot
be sure that this study will directly help you,
but it may help others. Taking part in this
study is up to you. You can stop taking part in
it at any time. It will not get in the way of
your care at this clinic.
Doak LG et al. Strategies to improve cancer
education materials. Patient Educ. 1996
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Role of Information Technology

• National Health Information Infrastructure
• Many envision a health care industry that is
  consumer-centric and information-rich, in which
  medical information follows the consumer, and
  information tools guide medical decisions.

The Decade of Health Information Technology. 2004
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Information Interventions

• Delivery devices
• Print, telephone, computer, wireless
• Intervention types
• Generic, personalized, targeted, tailored
• Home-based systems
• E.g. CHESS provides patients with
• Tailored information, decision support, advice,
  access to professionals
• Literacy demands have not been studied

http//chess.chsra.wisc.edu/Chess
Revere, Dunbar. Review of computer-generated
out-patient health behavior interventions. JAMIA
2001
Gustafson et al. Effect of computer support on
younger women with breast cancer. J Gen Intern
Med 2001
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Reframing the Problem

• Patient-centered health care, involving active
  consumers, implies shared responsibilities
• Consumers must have the motivation to ask
  questions, explore resources, and add to their
  knowledge base
• Information providers must develop high quality
  materials and systems that support consumer
  access and use
• As informaticians we need to consider the entire
  information life cycle

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Information Life Cycle

• Information creation
• Accurate, complete, appropriate for target
  audience
• Access
• Available without intellectual and physical
  restrictions
• Use
• Sensitive to characteristics of user

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Information Creation

• Selection of appropriate material
• Methods to guarantee accuracy, currency and
  overall quality
• Attention to literacy demands
• Classification and organization of material for
  optimal understanding

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Information Access

• Open access
• Intuitive interface design
• Seamless search and navigation capabilities
• Place information in appropriate context
• Just-in-time information

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Information Use

• Design for target audience
• Plan for unanticipated uses and users
• Consider variety of cognitive styles, strategies,
  and abilities
• Be sensitive to emotional and socio-cultural
  factors

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Exercise

• Consider what information interventions might be
  appropriate for our test patient and others like
  her, keeping in mind aspects of
• Information creation
• Information access
• Information use

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Our Test Patient