Consumer Health Informatics

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					Consumer Health Informatics:
Evidence-based decision making
    by patients and families

            Alexa T. McCray
         Harvard Medical School
  Biomedical Informatics: A Course for Health Professionals

                       September 21, 2010

•   What is consumer health informatics?
•   Rise of active consumers
•   Health literacy
•   Patient-centered health information
•   Clinical and Translational Science Initiatives
Consumer Health Informatics

"a subspecialty of medical informatics
which studies from a patient/consumer
perspective the use of electronic
information and communication to
improve medical outcomes and the
health care decision-making process."

                  AMIA Consumer Health Informatics Working Group
Active Consumers
  Rise of the Active Consumer
“Americans' pursuit of health takes place
within a widening network of both online and
offline sources. Whereas someone may
have in the past called a health
professional, their Mom, or a good friend,
they now are also reading blogs, listening to
podcasts, updating their social network
profile, and posting comments.”

     Access to Scientific Knowledge
           Webcast recorded August 30, 2007

As a mother of 2 children with a rare disease, I wanted to receive and learn
relevant critical information - and, I thought this could be achieved not
through another's interpretation but through access to publications from
reputable journals. If I didn’t understand something, I would find someone
capable of explaining. I wanted access to this critical information in order
to make informed decisions about care, to consider participation in clinical
studies, and to expand my knowledge of research. In addition, I believe it
is critical to have the ability to provide information to healthcare
professionals who may not have had exposure to the condition. I believe
access to information opens doors and when someone you love is ill, it is
important to be adequately informed.

                          Pat Furlong, Founding President and CEO, Parent Project Muscular
                          Dystrophy, at the ATA Web cast for patient advocates, August 30, 2007

                 Public Access Policies
• NIH Public Access Policy
    • Authors deposit their NIH-funded papers in
      PubMed Central
    • Applies to all peer-reviewed publications resulting
      from NIH-funded research
• Federal Research Public Access Act
    • Extends NIH policy to encompass US agencies
      with annual extramural research budgets of more
      than $100 million
 Introduced in Senate June 25, 2009 by Lieberman (ID-CT) and Cornyn (R-TX) (S.1373), and in House of
 Representatives April 15, 2010 by Doyle (D-PA), Waxman (D-CA), Wasserman-Schultz (D-FL), Harper (R-MS),
 Boucher (D-VA), Rohrabacher (R-CA) (HR 5037).
Received in my Mailbox 9/20/2010
Health Literacy
Health Literacy

  Health literacy is defined as the
  degree to which individuals have
  the capacity to obtain, process, and
  understand basic information and
  services needed to make
  appropriate decisions regarding
  their health.

                            IOM, 2004
                                              Health contexts
                                              - Media
                                              - Marketplace
                                              - Government agencies
                                              - Hospitals
                                              - Doctors’ offices …

- Education
- Cognitive abilities
- Social skills
- Emotional state
- Physical condition

                        Health Literacy: A prescription to end the confusion. IOM 2004
                     eHealth Literacy
Analytic Skills                                                 Context-Specific Skills
- Traditional Literacy                                          - Computer Literacy
- Information Literacy                                          - Science Literacy
- Media Literacy                                                - Health Literacy

                         Norman CD, Skinner HA. eHealth literacy: Essential skills
                         for consumer health in a networked world. JMIR 8(2). 2006
  Costs of Low Health Literacy

• Patients have
   – Lower self-management skills, less preventive care
   – Higher rates of chronic illnesses
   – Higher risk of hospitalization
• Poorer health outcomes
   – Contributes to health disparities
   – Contributes to overall cost of health care system

                    Paasche-Orlow et al. The causal pathways linking health literacy
                    to health outcomes. Am J Health Behav 2007:19-26.
  Howard DH. The relationship between                      Schillinger D et al. Association of health
  health literacy and medical costs. IOM 2004              literacy with diabetes outcomes. JAMA 2002

                        Betancourt J et al. Cultural competence and health
                        care disparities. Health Affairs 2005; 24(2):499-505.
   Assessing Health Literacy Demands
• Readability formulas
   – Word familiarity, words per sentence, syllables per word
       • Dale-Chall Formula (requires word lists)
       • McLaughlin SMOG Grading Formula
       • Fry Readability Graph, Gunning FOG Index, Flesch-Kincaid Formula,
         Flesch Reading Ease
• Suitability Assesment of Materials (SAM)
   – Goes beyond readability to include content, layout, cultural issues
• PMOSE/IKirsch
   – Assessment of tables, graphs

           Mosenthal PB, Kirsch IS. A new measure for            Doak CC et al. Teaching patients with
           Assessing document complexity. J Adoles &             low literacy skills. 2nd edition 1996.
           Adult Literacy 1998; 41:638-54.
           Ley P, Florio T. The use of readability formulas in   Vivian AS, Robertson EJ. Readability of
           health care. Psychology, Health & Medicine 1996       patient education materials. Clin Ther 1980
What Did the Doctor Say?
         • Make effective communications an
           organization priority to protect the
           safety of patients
         • Address patients’ communication
           needs across the continuum of
         • Pursue policy changes that
           promote improved practitioner-
           patient communications
Universal Precautions
, April 2010
Patient-centered Health Information
                Patient Portals

• Growing number of hospital-based practices
  provide patients some access to their medical
• Challenges
  –   Not broadly advertised
  –   Provider reluctance
  –   Patients have privacy fears
  –   Locus of control with health care system
Medicine 2.0- Patient Locus of Control

                           Eysenbach, JMIR, 2008
Personally Controlled Health Records

                                    Markle Foundation, November 2007
Markle Foundation, November 2007
“Blue Button”

                              Markle Foundation, August 2010
Clinical and Translational Science Initiatives
   Clinical and Translational Science
• Clinical and Translational Science Awards
  – As of September 2010, 55 CTSA awards in 28
     • Up to 60 awards planned

                 CTSA Programs

• Broad range of programs and approache
• Core areas of research include
  –   Clinical & translational methodologies
  –   Ethics
  –   Regulatory issues
  –   Disparities
  –   Education
  –   Informatics
  –   Community Engagement

 CTSA Community Engagement

• Each CTSA project has defined its community
  engagement program with more or less focus
  on one or more of the following topics:
  –   Community-based participatory research
  –   Recruitment into clinical trials
  –   Practice-based networks
  –   Health disparities
  –   Patient education

      Israel B et al. (2003). Critical issues in developing and following community-based participatory principles.
      Minkler M, Wallerstein N (Eds.), Community-based participatory research for health 2003:53-76.
   Public Communication Initiative
• Engage the public in understanding medical
  research through education, dialogue, and
• Assess the optimal modalities for information
  sharing with individuals and communities
• Ultimate goal:
  – Empower individuals to make health decisions based
    on the best available evidence
• Community Connect to Research (April 2009)
  – Formal evaluation summer 2009, summer 2010

• Collaborative for Community Engagement
  and Research
  – Formed in September 2009 with additional
    stimulus funding from the NIH
  – Collaboration among
     • Harvard University, Boston University, Tufts University
     • Health Care for All
     • Community Health Centers in Massachusetts
• Community Connect to Research enhanced
  to reflect this collaboration
  – Scope extended to all of Massachusetts
     Community Health Centers
• Duffy Health Center
  – Duffy Health Connect Project
• Codman Square Health Center
  – Improving Access to Health Communications and Research
    through Digital Media
• Dimock Center
  – Healthy Life Initiative
• Somerville Primary Care: Cambridge Health
  – Using the Internet for Sexual and Reproductive Health
    Information: Exploring the Experience of Young Brazilian Patients

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