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Presentation on theme: "Beyond the SEA - National Tele-discussion Erin M. Dunbar, MD 352-273-9000 Beyond the SEA - National Tele-discussion Erin."— Presentation transcript:

1 Beyond the SEA - National Tele-discussion Erin M. Dunbar, MD edunbar@neurosurgery.ufl.edu; 352-273-9000 Beyond the SEA - National Tele-discussion Erin M. Dunbar, MD edunbar@neurosurgery.ufl.edu; 352-273-9000 THE ESSENTIAL ROLE OF HEALTH CARE LITERACY IN THE MEDICAL TEAM

2 A Special To: Teleconference hosts and participants Colleagues and co-investigators Patients, caregivers, and care teams

3 Disclosures:Disclosures: Scientific Advisor: Genentech Journal Editorials, Reviews & Book Chapters

4 ObjectivesObjectives  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  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

5 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) 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

6 Interdisciplinary Health Care Multiple Modalities

7 Multiple Locations

8 Multiple Tools

9 Increasing Tasks ~ Decreasing Tools  Diagnosis  Anatomy & Function  Disease Course  Treatments (2 nd opinions, multi- modality, “trials” vs. “routine”)  Medical Terminology  Symptom Management  Prognosis  Financial Assistance  Coping & Emotional  Work-related Issues  Caregiver & Children  Family Dynamics  Diagnosis  Anatomy & Function  Disease Course  Treatments (2 nd 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!

10 Huge Unmet Need Dramatic medical & financial implications:  Medicare claims from 2003–2004 (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. Dramatic medical & financial implications:  Medicare claims from 2003–2004 (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.

11 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 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

12 Huge Unmet Need  Cont’d  Major themes:  Communication of the diagnosis  Formal support  Information specific needs  Coordinated services  Healthcare system is inadequate  Importance of a interdisciplinary, coordinated approach  Cont’d  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

13 Unmet Needs Patient/caregiver self-seeking information is inadequate  Internet information seeking behaviors of parents whose children have life-threatening illnesses N=129, 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 Patient/caregiver self-seeking information is inadequate  Internet information seeking behaviors of parents whose children have life-threatening illnesses N=129, 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, C…Shenkman, E, Pediatr Blood Cancer. 2011 May;56(5):805-11. doi: 10.1002/pbc.22674. Epub 2010 Dec 7.

14 Unmet Need Patient’s 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 Patient’s 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:

15 Unmet Needs Provider & public-derived information is inadequate  Attitudes to Colorectal Cancer Screening After Reading the Prevention Information, N=42, >50yo, 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 Provider & public-derived information is inadequate  Attitudes to Colorectal Cancer Screening After Reading the Prevention Information, N=42, >50yo, 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

16 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. 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 Feb;11(2):142-50

17 HEALTH CARE LITERACY IS ESSENTIAL TO THE MEDICAL TEAM

18 KNOWLEDGE IS ESSENTIAL TO HEALING

19 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 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

20 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. 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

21 Health Care Literacy From & For All Internet & other virtual media, cont’d  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! Internet & other virtual media, cont’d  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

22 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)  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/

23 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 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/GeneralCompetenciesStandards21307.pdfwww.acgme.org

24 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 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

25 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. 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

26 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 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

27 Health Care Literacy Around the World

28 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.  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. 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 Resources:www.healthcare.gov & specialty society websites

29 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-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

30 Health Care Literacy Around the US Academic Examples of Health Literacy Programs  University of Wisconsin, Madison’s 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 Center’s Shared Decision Making Center  http://www.dhmc.org  Many others........YOURS? Academic Examples of Health Literacy Programs  University of Wisconsin, Madison’s 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 Center’s Shared Decision Making Center  http://www.dhmc.org  Many others........YOURS?

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

32 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. 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.

33 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  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

34 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 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

35

36 Unmet Need Addressed: HCL for Brain Tumor Patients, 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  House-staff education initiatives  Focus Group Research  Internet: “Informed Cancer Patients” program  “Info Rx” & “Resource Rx” interactive questionnaires  Mobile education cart & education room  Grant applications  House-staff education  House-staff education initiatives

37 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: 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 are reported Design/Methods: 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 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

38 Focus Group: Evaluating HCL Needs in Brain Cancer  IRB approved, interdisciplinary  Audio-taped, transcribed  360 0 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  IRB approved, interdisciplinary  Audio-taped, transcribed  360 0 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

39 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:  BCP’s 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  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:  BCP’s 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

40 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 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

41 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 Institute’s site  www.healthcare.gov  University of Wisconsin, Madison’s 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.as px  Dartmouth-Hitchkock Medical Center’s Shared Decision Making Center  http://www.dhmc.org 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 Institute’s site  www.healthcare.gov  University of Wisconsin, Madison’s 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.as px  Dartmouth-Hitchkock Medical Center’s Shared Decision Making Center  http://www.dhmc.org

42 Unmet Need Addressed: Aligning Healthcare Needs & Resources http://www.sacramentoexecutive.com/Cartoon6prescription_dos age.jpg; www.knockknock.biz/.../product_12056_l1.jpg; REFS www.knockknock.biz/.../product_12056_l1.jpg  Increasing disparity between needs & resources  Inadequate data to justify staff, resources, etc ---- both immediate and long-term  HCL is under-utilized and potentially powerful

43 HCL Examples for Patients & Caregivers Not complete, dynamic, individualized, nor specific

44 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___

45 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_____

46 Resource Rx  Today’s date: ______ Patient’s 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: __________________

47 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 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

48 Navigating The Road of Treatment Example of Interactive Education Module Department of Neurosurgical Specialties Dr. Erin Dunbar, M.D. University of Florida

49 When/What New Treatment to Start: 1.General Science 2.General Safety 3.Goals/Wishes/Fears 4.Logistics 5.Strategy 1.Order of Therapy Relatively, equally likely to be safe or work Oral, IV Outpatient, inpatient Cost/insuranceFrequency Interested in a Trial? See next slide Support (drivers) Where located, available

50 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

51 Tools to Decide Treatment:  Exams  Labs  Goals/Wishes  Symptoms  Imaging

52 What/When New Treatment to Stop: 1.Do you want it? 2.Is it Safe? 3.Is it getting the job done?

53 What your MRI images tell us Leaky Brain = contrast in brain = symptoms from brain leakage

54 Intact Blood Brain BarrierBroken Blood Brain Barrier Contrast Dye What Your MRI Is Telling Us Only Shows the Broken Blood Brain Barrier Break is Non- specific: Inflammation Tumor Infection Stroke Other

55 Tumor: Known Risks and Symptoms 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

56 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 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

57 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!  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 other’s Successes

58  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?  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? Current & Future

59 Thank you for all you do! The End Erin M. Dunbar, MD 352-273-9000edunbar@neurosurgery.ufl.edu


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