FHSLA 2009 Creating Connections Annual Meeting Erin M. Dunbar, MD

1. HEALING BEGINS WITH KNOWLEDGE: THE INCREASING IMPORTANCE OF HEALTH CARE LITERACY IN THE MEDICAL TEAM FHSLA 2009 Creating Connections Annual Meeting Erin M. Dunbar, MD

2. Objectives • Multi-disciplinary Medicine Example at UF • Increasing Tasks ~ Decreasing Time & Tools • Huge Unmet Need • Health Care Literacy From & For All • Health Care Literacy Around the World • Health Care Literacy Initiatives at UF • Current & Future • Discussions & Questions • How librarians can collaborate with patients & health care professionals in YOUR area

3. Multiple Modalities

4. Multiple Locations

5. Multiple Tools

6. Diagnosis Anatomy & Function Disease Course Treatments (2nd opinions, multimodality, standard, trials) 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 Increasing Tasks ~ Decreasing Tools

7. HEALING BEGINS WITH KNOWLEDGE…..

8. ….THE INCREASING IMPORTANCE OF HEALTH CARE LITERACY IN THE MEDICAL TEAM

9. Huge Unmet Need • Policymaker Goals: improve the quality of care & reduce costs. • Medicare claims data from 2003–2004 (11 million) • 19.6% were re-hospitalized within 30 days. • In 50.2%, there was no bill for a visit to a physician’s office between the time of discharge and re-hospitalization. • 34.0% were re-hospitalized within 90 days. • Unplanned re-hospitalizations cost Medicare $17.4 billion in 2004 alone. • Lack of education during discharge planning and subsequent physician office visits were implicated as causative factors. 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.

10. Huge Unmet Needs A new diagnosis can have deep and long-lasting effects • Care & support are of utmost importance to coping. • Identification of educational needs is important. • Emotional, social, and physical limitations were identified as most important. • Formal information and support services are needed. • Major themes: • Communication of the diagnosis to them • Information Needs • Uncoordinated services after their diagnosis • Reaction to the diagnosis & Formal support • Time before diagnosis…Family/careers…Future…Physical disabilities • Little is known about how “recommended practices” influence patients' experience. • Importance of a multi-disciplinary, 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

11. Health Care Literacy From & For All Heath Literacy 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.’ • Studies have increased dramatically • Gap between the conceptual definition of HL and its application. • Three levels: functional, communicative and critical. • Further research is needed to develop measures of HL, including those measuring the interaction of the patient HL with the health and social contexts in which the patient lives. 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

12. Health Care Literacy From & For All Information Technology (IT) • Advances knowledge & skills for health care professionals • Studies show only basic computer skills are needed • Efforts still needed to enhance computer skills & awareness. • Attitudes of health care professional to the development of IT in practice matters! • Need for flexibility and usability • Appropriate education and training • Need for the software to be 'fit for purpose‘ • Emphasizes the 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

13. 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 and non-English-speaking populations • 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. • 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

14. Health Care Literacy From & For All Health Care Professionals need trusted resources • Both for themselves and to give to patients. Trainees need to be competent in health care literacy. • Benefit themselves and those they serve • Residents, nurses, pharmacists, etc. • Example: ACGME Core Competencies • Patient Care • Medical Knowledge • Practice-based Learning and Improvement • appraise and assimilate scientific evidence • improve patient care based on life-long learning • Interpersonal and Communication Skills • effective exchange of information and collaboration with patients, their families, and health professionals • Professionalism • Systems-based Practice • responsiveness to the system of health care, as well as the ability to call effectively on other resources and optimize inter-professional teams 1. Patient-doctor communication. Teutsch C. Med Clin North Am 2003; 2. ww.acgme.org/outcome/comp/GeneralCompetenciesStandards21307.pdf

15. 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 cancer information should be provided directly to caregivers • Health interactions between caregivers and patients should be improved • Modern healthcare demands a high level of health literacy to successfully manage disease • Older adults may be at a distinct disadvantage • physiological, cognitive, psychological & communicative factors. • 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

16. 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

17. Health Care Literacy From & For All Health Science Librarians • Provide information literacy training to health care professionals. • (AND SO MUCH MORE) • Research is needed to demonstrate that this improves clinicians' information skills or 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

18. Health Care Literacy Around the World

19. Health Care Literacy Around the World 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. • 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 Center’s Shared Decision Making Center • http://www.dhmc.org • Many others........

20. Health Care Literacy Initiatives at UF Gwen Lombard, Erin Dunbar, Beth Layton, Nita Ferree

21. 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

22. Health Care Literacy Initiatives at UF Needs & Goals of UF • Create unique learning partnerships • Preston A. Wells, Jr. Center for Brain Tumor Therapy & UF Health Sciences Library (and others!) • Promote proactive inquiry & self-directed learning • “Information Prescription” • Comprehensive, High-quality, Up-to-date • “Clinical Informationalist” (Health Information Engineer) • Point-of-need, help for diverse needs • “Immersed” Librarian (Sewell Foundation Grant) • Virtual, Transferable • Mobile unit of information for patients, caregivers, staff, trainees • “Informed Cancer Patients” Website& novel educational materials

24. Information Prescription Circle one: a patient:___ Caregiver/Family member:___ Interested person:___ Description of information request:Disease: ______________________ I’d like information about: * Risk factors * diagnosis * staging * treatment at diagnosis * recurrence *Specific medicines or treatments *monitoring * prognosis * other___________ Patient or caregiver questions about: * Talking to relatives or health care provider *Memory and personality *Changes in self-perception or how others perceive you * Emotional wellbeing, coping * Energy/Fatigue * Nutrition *Other Patients, please let us know if:________________________________ I would like assistance and/or education with: * Finding health information, example, how to look for clinical trials * other______ * Community, state or national resources (please describe): * Shands-UF resources (please describe) I would like to be contacted in the future for: ___________________ I would like to see the following resources and/or services available:

25. 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.

26. Health Care Literacy Initiatives at UF Potential outcomes • improved sharing of information between patient, caregiver and medical providers • increased legitimization of the impact of effective consumer health literacy programs • resource justification for an immersed librarian • economic impact and resource utilization analyses • improved satisfaction and quality for all involved • improved healthcare outcomes • new models of interdisciplinary collaboration • novel use of the librarian in quality assurance, quality control, risk management, workflow and resource utilization, etc.

27. Current & Future • Creating & Expanding Connections • Developing Services • Scientifically Measuring Effects • Getting the word out • Committees & Advisory Groups • Preparations for hospital & extramural grants

28. Discussion & Questions How librarians can collaborate with patients & health care professionals 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 other’s Successes

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