Beyond the SEA - National Tele-discussion

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THE ESSENTIAL ROLE OF HEALTH CARE LITERACY IN THE
MEDICAL TEAM

• Beyond the SEA - National Tele-discussion
• Erin M. Dunbar, MD
• edunbar_at_neurosurgery.ufl.edu 352-273-9000

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A Special
To Teleconference hosts and participants Colleagu
es and co-investigators Patients, caregivers, and
care teams
3
Disclosures
Scientific Advisor Genentech Journal Editorials,
Reviews Book Chapters
4
Objectives

• Interdisciplinary Health Care Teams
• Example at UF
• Increasing Tasks Decreasing Time Tools
• Huge Unmet Need
• Health Care Literacy From All For All
• Health Care Literacy Around the World
• Health Care Literacy Initiatives at UF
• Forward Together

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Definition of Health Care Literacy

• Health Care Literacy (HCL) or Health Literacy
  (HL) is defined by the WHO as '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.
• Gap between the definition its application
• Three levels functional, communicative, critical
  
• Research is needed to develop measures of HL and
  measure the interaction of the patient HL within
  health and social contexts (Instit of Medicine,
  03)

Patient health literacy and participation in the
health-care process. Ishikawa H, Yano E Health
Expect. 6/2008 Health literacy revisited what
do we mean and why does it matter? Peerson A,
Saunders M, Health Promot Int. 4/09
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Interdisciplinary Health Care Multiple Modalities
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Multiple Locations
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Multiple Tools
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Increasing Tasks Decreasing Tools

• Diagnosis
• Anatomy Function
• Disease Course
• Treatments (2nd opinions, multi-modality,
  trials vs. routine)
• Medical Terminology
• Symptom Management
• Prognosis
• Financial Assistance
• Coping Emotional
• Work-related Issues
• Caregiver Children
• Family Dynamics

• Increasing Complexity of Care
• Decreasing Continuity of Care
• Travel difficulties
• Money
• Immobility
• Working caregiver
• Declining Reimbursement
• Vanishing Time Allowance
• 15 minute office visit!
• Long distances between Loves ones
• Unregulated Enormous Resources
• Internet
• Blogs

Huge Unmet Need!
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Huge Unmet Need

• Dramatic medical financial implications
• Medicare claims from 20032004 (11 million)
• 19.6 were re-hospitalized within 30 days.
• 50 no MD visit from discharge to re-admit.
• 34. were re-admitted within 90 days.
• Unplanned re-admits 17.4 billion in 2004.
• Lack of education during discharge planning and
  subsequent physician office visits were
  implicated as causative.

• Re-hospitalizations among Patients in the
  Medicare Fee-for-Service Program, NEJM, 1/09,
  Stephen F. Jencks, M.D., M.P.H., Mark V.
  Williams, M.D.,and Eric A. Coleman, M.D., M.P.H.

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Huge Unmet Needs

• Identification of educational needs is important,
  but the how to is inadequate
• A new diagnosis has deep lasting effects
• Emotional, social, physical limitations
• Formal information support services are needed
  for coping
• Little is known about how routine practices
  influence patients' experience

1. Patient care at diagnosis a planned education
approach. Vile C, Nurs Stand. 3/04 2. How does
current care practice influence the experience of
a new diagnosis of motor neuron disease? A
qualitative study of current guidelines-based
practice. Hugel H, et al, Amyotroph Lateral
Scler. 9/06 3. Identifying the educational needs
and concerns of newly diagnosed patients with
breast cancer after surgery. Stephens PA, et al
Clin J Oncol Nurs. 4/08
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Huge Unmet Need

• Contd
• Major themes
• Communication of the diagnosis
• Formal support
• Information specific needs
• Coordinated services
• Healthcare system is inadequate
• Importance of a interdisciplinary, coordinated
  approach

1. Patient care at diagnosis a planned education
approach. Vile C, Nurs Stand. 3/04 2. How does
current care practice influence the experience of
a new diagnosis of motor neuron disease? A
qualitative study of current guidelines-based
practice. Hugel H, et al, Amyotroph Lateral
Scler. 9/06 3. Identifying the educational needs
and concerns of newly diagnosed patients with
breast cancer after surgery. Stephens PA, et al
Clin J Oncol Nurs. 4/08
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Unmet Needs

• Patient/caregiver self-seeking information is
  inadequate
• Internet information seeking behaviors of parents
  whose children have life-threatening illnesses
  N129, phone survey, pediatric palliative care
• 75 parents used internet, 64 used daily
• Never used Hispanic (50), less than high school
  educ. (64) (P??0.02)
• Despite high levels of e-health literacy they
  are not confident or are unsure about the quality
  of information on the Internet

Knapp, CShenkman, E, Pediatr Blood Cancer. 2011
May56(5)805-11. doi 10.1002/pbc.22674. Epub
2010 Dec 7.
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Unmet Need

• Patients ability to use information is
  inadequate
• Health literacy the provision of information to
  women with breast cancer
• Key information on treatment complications and
  clinical trials is often imparted using written
  educational material
• Study of functional HL vs. the level of written
  information provided, cross-sectional survey
• HL levels reading level of written patient
  information were high, yet 9 of patients would
  be unable to read the information provided
• Functional HL levels were lower, with 19
  inadequate
• Patient educ. materials must be written at an
  appropriate level and different modalities of
  communication should be used to ensure adequate
  comprehension

Reference
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Unmet Needs

• Provider public-derived information is
  inadequate
• Attitudes to Colorectal Cancer Screening After
  Reading the Prevention Information, N42, gt50yo,
  questionnaire
• Barriers to increase colorectal cancer screening
  are negative attitudes to screening tests
• Negative attitudes were evoked through reading
  cancer prevention information and impede the
  decision to get screened
• Additional education about self-relevance of
  cancer risk is necessary
• Further research in individuals with limited HL
  is recommended

Liu, CJ et al, J Cancer Educ. 2011 Mar 1
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Unmet Need

• Current Health Care, Government Industry
  provided information inadequate possibly
  harmful
• Cancer-related direct-to-consumer advertising a
  review
• The direct-to-consumer advertising (DTCA) reaches
  out to consumers by bypassing important
  gatekeepers, e.g., physicians.
• The emergence of new information platforms and
  the introduction of genetic tests directly to the
  consumer have heightened the concern with DTCA
  and its potential consequences.
• These effects of DTCA are particularly important
  given the communication inequalities among social
  groups, with class, race and ethnicity
  influencing how people access, seek, process and
  act on information.

Kontos, EZ, Nat Rev Cancer. 2011 Feb11(2)142-50
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HEALTH CARE LITERACY IS ESSENTIAL TO THE MEDICAL
TEAM
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KNOWLEDGE IS ESSENTIAL TO HEALING
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Health Care Literacy From For All

• Information Technology (IT)
• Studies only basic computer skills needed
• Attitudes of health professional to the
• development of IT in practice matters!
• Need for flexibility, appropriate education
  training
• Need for the software to be 'fit for purpose
• Need to carefully plan the introduction of
  IT-based systems into work practices

1. Information literacy-what it is about?
Literature review of the concept and the context.
Saranto K,et al. Int J Med Inform. 6/04. 2. The
attitudes of health care staff to information
technology a comprehensive review of the
research literature. Ward R, et al. Health Info
Libr J. 6/08
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Health Care Literacy From For All

• Internet other virtual media
• Critical factors in optimizing cancer
  communication for diverse audiences
• literacy, cultural, and linguistic issues
• Significant unmet needs
• low-literate, multicultural, non-English-speaking
  
• Emphasizes the importance of understanding the
  strengths and weaknesses of online cancer
  communication for vulnerable groups
• guide patients to better Websites
• supplement that information with oral and
  tailored communication.

1. Online cancer communication meeting the
literacy, cultural and linguistic needs of
diverse audiences. Neuhauser L, Patient Educ
Couns. 6/08 2. Evidence-based resources and the
role of librarians in developing evidence-based
practice curricula. Klem ML. J Prof Nurs. 12/05
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Health Care Literacy From For All

• Internet other virtual media, contd
• Development Introduction of Technologies
• Requires the acquisition and use of a complex set
  of skills
• Ability to access understand the technology
• Ability to locate and critically evaluate
  relevant material
• Benefits of health sciences librarians!

1. Online cancer communication meeting the
literacy, cultural and linguistic needs of
diverse audiences. Neuhauser L, Patient Educ
Couns. 6/08 2. Evidence-based resources and the
role of librarians in developing evidence-based
practice curricula. Klem ML. J Prof Nurs. 12/05
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Tools for HCL

• Websites, including click-key analysis
• Written materials
• Scales
• Surveys questionnaires
• Focus groups interviews
• Electronic data capture with a central system
  that allows for real-time interaction as well as
  virtual review and analysis
• Hand Held Device or digital pen
• IVR (Interactive Voice Response)
• Internet Web
• Medical devices (glucometers, breathalyzers)

http//www.phtcorp.com/why_epro/what_is_epro/
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Health Care Literacy From For All

• Trainees need to be competent in health literacy
• Example ACGME Core Competencies
• Medical Knowledge
• Practice-based Learning and Improvement
• appraise and assimilate scientific evidence
• Interpersonal and Communication Skills
• effective exchange of information and
  collaboration with patients, their families, and
  health professionals
• Systems-based Practice
• responsiveness to the system of health care
• ability to call effectively on resources and
  optimize inter-professional teams

Accreditation Council for Graduate Medical
Education www.acgme.org Patient-doctor
communication. Teutsch C. Med Clin North Am 2003
2. ww.acgme.org/outcome/comp/GeneralCompetenciesSt
andards21307.pdf
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Health Care Literacy From For All

• Patient Caregiver
• Caregivers play a significant role in diagnosis
  treatment.
• The extent to which caregivers can comprehend the
  health information they receive is critical
• Targeted, practical info provided directly to
  caregivers
• Caregivers patients interactions need
  improvement
• Modern healthcare demands a high level of health
  literacy to successfully manage disease
• Older adults may be at a distinct disadvantage
• New strategies are needed to compensate for these
  losses
• creating a health care environment of shared
  meaning and understanding tailored to the aging
  patient

1. Understanding the impact of family caregiver
cancer literacy on patient health outcomes. Bevan
JL, Patient Educ Couns. 6/08 2. Health literacy
and cancer communication with older adults.
Sparks L, Patient Educ Couns. 4/08
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Health Care Literacy From For All

• Health Sciences Librarian
• Identifying optimizing skills
• Basis for a training program model that reflects
  changes in both health care delivery
  information technology
• All surveyed groups rated as most important
• Personality characteristics
• Skills Understanding of the health sciences
  Education Research Technical skills
• Continuing professional development is required
• Emphasis on teaching skills, outreach work,
  marketing and promotion, research skills and
  methods, subject knowledge and terminology, and
  management skills.

1. Preparing librarians to meet the challenges of
today's health care environment. Giuse NB, et al.
J Am Med Inform Assoc. 1/97. 2. The education and
training needs of health librarians - the
generalist versus specialist dilemma. Petrinic T,
Health Info Libr J. 9/07
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Health Care Literacy From For All

• Health Science Librarians
• Provide information literacy training to health
  care professionals, patients, caregivers
• (AND SO MUCH MORE)
• Research is needed to show it improves
  clinicians' information skills patient care
• Selecting appropriate measures to evaluate the
  impact of training
• Demonstrating validity and reliability
• Providing guidance to health librarians health
  care system

Evaluating information skills training in health
libraries a systematic review. Brettle A Health
Info Libr J. 12/07
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Health Care Literacy Around the World
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HCL in Health Care Reform

• Patient Protection Affordable Health Care Act
  (PPACA)
• Hundreds of New Committees and Mandates
• Accountable care organizations (ACOs)
• quality metrics
• New Metrics Needed (Seek provider input)
• Patient individualization (HCL)
• Prioritization , academic, clinical,
• technology incorporation, etc.

Resources www.healthcare.gov specialty
society websites
Patient Protection and Affordable Care Act
(PPACA) of 2010, (P.L. 111-148 H.R. 3590, Sec.
10103(c)-Sec. 2709.) ASCO POST Proceedings,
2010
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HCL in PPACA

• Patient-Centered Research Outcomes Institute
• Assist patients, clinicians, purchasers,
  policy-makers
• Improve evidence on prevention, diagnosis,
  treatment
• Identify, prioritize, carry out the agenda
• Includes trial design conductance
• Standing Methodology Committee
• Goal comparative effectiveness
• Center for Medicare Medicaid Innovation
• Interagency Working Group on Health Care Quality
• Consumer Advocacy Council
• Advisory Committees On Public Education (various)
• Nat. Prevention, Health Promotion Public Health
  Council

Patient Protection and Affordable Care Act
(PPACA) of 2010
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Health Care Literacy Around the US

• Academic Examples of Health Literacy Programs
• University of Wisconsin, Madisons Comprehensive
  Health Enhancement Support System (CHESS)
• http//chess.wisc.edu/chess/
• Computer-based system of integrated services
  designed to help individuals cope with a health
  crisis or medical concern
• Research has demonstrated an increased quality of
  life in groups of cancer patients
• http//chess.wisc.edu/chess/publications/archives_
  prj.aspx
• Dartmouth-Hitchkock Medical Centers Shared
  Decision Making Center
• http//www.dhmc.org
• Many others........YOURS?

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Health Care Literacy Initiatives at UF
Gwen Lombard, Erin Dunbar, Beth Layton, Nita
Ferree, (Salvatore Savona, many others) now, OH
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Health Care Literacy Initiatives at UF

• Diverse Collaborations
• Health Professions
• College of Public Health Health Professions
• Department of Behavioral Science and Community
  Health
• Journalism Communication
• Preston A. Wells, Jr. Center for Brain Tumor
  Therapy
• Department of Neurological Surgery
• UF Shands Cancer Center Education Resource
  Center
• Health Science Libraries
• Volunteer patient or caregiver
• Resident or other trainee
• Social worker
• Department of Pharmacy
• Nursing Services, etc.

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Health Care Literacy Initiatives at UF

• Identification of Needs
• Patient, caregiver, trainees, health care
  professionals, librarians, hospital, library, etc
• Pilot data
• Focused groups, surveys
• Create Promote Connections
• Implement Programs
• Measure Effects Scientifically
• Refinement
• Advisory committees, research results
• Establish Best Practice Model
• Funding

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Health Care Literacy Initiatives at UF

• Needs Goals of UF
• Create unique learning partnerships
• Promote proactive inquiry self-directed
  learning
• Information Prescription
• Comprehensive, High-quality, Up-to-date
• Clinical Informationalist (Health Info
  Engineer)
• Point-of-need, help for diverse needs
• Immersed Librarian (Sewell Foundation Grant)
• Virtual, Transferable
• Mobile Education Cart (wireless
  computer/printer)
• Informed Cancer Patients Website novel
  educational materials

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(No Transcript)
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Unmet Need AddressedHCL for Brain
TumorPatients, Caregivers, House-staff, Staff

• Focus Group Research
• Internet Informed Cancer Patients program
• Info Rx Resource Rx interactive
  questionnaires
• Mobile education cart education room
• Grant applications
• House-staff education initiatives

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Exploring the Health Care Literacy Needs of Newly
Diagnosed Brain Cancer Patients (BCPs) From the
Perspectives of Both Patients Health Care
Providers (HCPs)

• Design/Methods 
• Qualitative theme-saturation analysis (validated
  in HCL)
• 1 hr interviews by non-medical investigators
  using templated questions discussion
• Sequential blinded analyses until consensus
• To date, 3 of many planned focus groups
• are reported

Qual. Methods for Health Care Res, 06 Sewell
Scholarship POST article Student Scholarships
Presentations Nat. MLA 2 Florida Lib. Assoc.
Submissions American Academy of Neurology 2011
Annual Meeting National Library Assoc 11
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Focus GroupEvaluating HCL Needs in Brain Cancer

• IRB approved, interdisciplinary
• Audio-taped, transcribed
• 3600 Audience patient, caregiver, house-staff,
  staff
• Query their impressions of the impact of various
  tools and info
• Theme saturation ? pilot data
• Hypothesis-generating for more definitive research

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Qualitative Results

• Results  HCPs BCPs were distinct in all
  questions.
• BCPs HCL needs changed throughout time were
  unique from their perception of caregivers HCL
  needs
• Notable differences at diagnosis included
• BCPs HCL need to understand/improve symptoms,
  provider/hospital quality immediate medical
  events
• Caregivers perceived HCL need to
  understand/improve treatment long-term
  prognosis
• HCPs perceived HCL needs for BCPs included a
  distinct set of immediate medical events
  insufficiency in understanding /- improving
  non-medical needs

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Outcomes for HCL Initiatives

• Current
• Unique interdisciplinary collaboration
• Presentations, grant applications
• Resource justification
• Librarian social worker positions, technology
• In development
• Add direct caregiver house-staff perspectives
• Add imbedded analysis of technology use
• Future
• New metrics for efficacy of health literacy
  programs
• Risk management, workflow, economic, quality care

Sewell Scholarship POST article Student
Scholarships Presentations Nat. MLA 2 Florida
Lib. Assoc. Submissions American Academy of
Neurology 2011 Annual Meeting National Library
Assoc 11
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• Resources for Health Care Literacy
• UF Health Science Center Webpage
• www.library.health.ufl.edu including Informed
  Brain Cancer Patient site
• Patient-Centered Research Outcomes Institutes
  site
• www.healthcare.gov
• University of Wisconsin, Madisons Comprehensive
  Health Enhancement Support System (CHESS)
• Computer-based system of integrated services
  designed to help individuals cope with a health
  crisis
• There research has demonstrated an increased
  quality of life in groups of cancer patients
• http//chess.wisc.edu/chess/publications/archives_
  prj.aspx
• Dartmouth-Hitchkock Medical Centers Shared
  Decision Making Center
• http//www.dhmc.org

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Unmet Need AddressedAligning Healthcare Needs
Resources

• Increasing disparity between needs resources
• Inadequate data to justify staff, resources, etc
  ---- both
• immediate and long-term
• HCL is under-utilized and potentially powerful

http//www.sacramentoexecutive.com/Cartoon6prescri
ption_dosage.jpg www.knockknock.biz/.../product_1
2056_l1.jpg REFS
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HCL Examples for Patients Caregivers
Not complete, dynamic, individualized, nor
specific
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Information Rx

• I am a patient___ a caregiver___ an
  interested individual___
• I would like more information on
• Disease ______________________
• Risk factors____, diagnosis____, staging____,
  treatment at diagnosis____, treatment at
  recurrence____, monitoring____, prognosis____,
  other____
• Being a patient and/or Caregiver
• Support____ Home care_ hospice care_ End of
  life
• Wellbeing
• Memory___ Personality___ Emotional changes___
  Coping___ Talking to children or relative___
  Changes in self-perception or how others perceive
  you___ Other___
• Energy
• Fatigue___ Nutrition while receiving treatment
  Changes in taste___ Changes in Bowel Habits___
• Therapy
• Specific medicines or treatments (uses,
  risks/benefits, results______ Use of
  alternative medicines___
• Comfort
• Quality of Life____ specific symptoms___
• Rehabilitation
• Exercise___ Home or Facility Rehab___ Other___

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Information Rx

• When seeking education or assistance for health
  issues
• I consider myself
• Beginner___ Somewhat skilled___ Very skilled___
• I consider it
• Not stressful___ Somewhat stressful___ Very
  stressful___
• I would like assistance and/or education with
• Computer skills
• internet navigating, UF-HSC Library resources,
  other_______
• Searching for
• clinical trials__ health information___
  Shands-UF resources___ Resources (community,
  state, USA)____
• I would like to be contacted in the future for
• YES/NO I am ok being contacted about updates
  on______
• New services/programs at UFHSC Library or
  UF-Shands Other____
• The best way to contact me is_____________
• I would like the following recourses/services
  available in the future_____

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Resource Rx

• Todays date ______ Patients name is
  ______________
• Contact s are __The best time to be contacted
  is ___
• The patient lives in __The patient lives alone or
  with __
• Diagnosis is ___Date of diagnosis_____Past
  medical __
• Please check those that may apply to your own
  concerns questions
• ___ 1) Coping with physical changes from illness,
  surgery, treatment
• ___ 2) Home Care, Medical Equipment needs,
  Transitions Program, Hospice
• ___ 3) Care Giver issues emotional support for
  patient, family, friends
• ___ 4) Financial assistance for treatment and/or
  medications
• ___ 5) Job/work related issues, FMLA, SSD,
  insurance
• ___ 6) Crisis intervention, grief and loss
  concerns
• ___ 7) Local lodging, transportation
• ___ 8) Decision making with regard to quality of
  life your treatment goals
• ___ 9) Emotional and/or spiritual support for
  patient and/or family
• ___ 10) Other __________________

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Outcomes for Info Rx Resource Rx

• Current
• Justification of staff
• Social workers, Librarians, grad student
  researchers, staff
• Quality safety data for UF-COM and Hospital
  committees
• Healthcare utilization and unmet needs
• Grant applications
• Future
• Assess adequacy of public health information
  technology
• Tool development for improving measuring
• Residency and staff education
• Funding

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Example of Interactive Education Module

• Navigating The Road of Treatment

Department of Neurosurgical Specialties Dr. Erin
Dunbar, M.D. University of Florida
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When/What New Treatment to Start

• General Science
• General Safety
• Goals/Wishes/Fears
• Logistics
• Strategy
• Order of Therapy

Relatively, equally likely to be safe or work
Oral, IV Outpatient, inpatient Cost/insurance Freq
uency Interested in a Trial? See next
slide Support (drivers) Where located, available
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Interested in a Trial?

• Trials Phases
• Phase 1 Safe?
• Phase 2 Work?
• Phase 3 Compare to existing therapies
• Trial Types
• Therapeutic
• Supportive, quality of life
• Outcome and risk factors
• Tissue analysis

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Toolsto Decide Treatment

• Exams
• Labs
• Goals/Wishes
• Symptoms
• Imaging

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What/When New Treatment to Stop

• Do you want it?
• Is it Safe?
• Is it getting the job done?

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What your MRI images tell us
Leaky Brain contrast in brain symptoms from
brain leakage
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What Your MRI Is Telling Us Only Shows the Broken
Blood Brain Barrier
Intact Blood Brain Barrier
Broken Blood Brain Barrier
Break is Non-specific Inflammation Tumor Infectio
n Stroke Other
Contrast Dye
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• Tumor
• Known Risks and Symptoms

• Treatment Potential Risks and Symptoms

• Confusion/Speech
• Blood clots
• Bleeding
• Lowered immune system
• Infection
• Fatigue
• Headache
• Seizure
• Loss of function and sensation
• Memory/personality

• Lower blood counts
• Infection
• Fatigue
• Nausea or constipation
• Specific organ toxicities
• Blood clots
• Bleeding

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Health Care Literacy Initiatives at UF

• Potential outcomes
• improved sharing of information
• legitimize the impact of health literacy programs
• resource justification for an immersed librarian
  resources
• new models of interdisciplinary collaboration
• novel use of the librarian in quality assurance,
  quality control, risk management, workflow and
  resource utilization, etc.
• improved satisfaction and quality for all
  involved
• improved healthcare outcomes

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Health Care Literacy in YOUR AREA

• Hospital Websites Education Program
• Patient Staff Satisfaction Surveys
• Education Support Groups
• Creating Connections
• Nurses, administrators, providers, social
  workers,
• clergy, counselors, training programs, community
• vendors, advocacy groups..
• Pick a pilot project
• Have Fun!

• Build on each others Successes

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Current Future

• Creating Expanding Connections
• Are you using our tools?
• Can we use yours?
• Developing Services
• Scientifically Measuring Effects
• Best models?
• Outreach models
• How can we leverage?
• Feedback?
• Measure impact?

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Thank you for all you do!The End
Erin M. Dunbar, MD 352-273-9000 edunbar_at_neurosurge
ry.ufl.edu