here - Faculty of Social Sciences
Transcription
here - Faculty of Social Sciences
Health literacy in the information age: How a good thing may turn into something bad. Peter J. Schulz Institute of Communication & Health University Lugano Institute for Research in Social Sciences & School of of Communication Research Seminar, University of Ulster February 2013 Literacy domains biological literacy environmental literacy multimedia literacy civic literacy family literacy new media literacy climate literacy financial literacy network literacy computer literacy health literacy organizational literacy consumer literacy information literacy political literacy cultural literacy internet literacy religious literacy dance literacy legal literacy science/scientific literacy digital literacy linguistic literacy statistical literacy ecological literacy media literacy technological literacy economic literacy multicultural literacy television literacy Schulz: Health literacy in the information age. IRiSS 2013 2" Literature review ! Databases: Pubmed, PsycINFO, Communication & Mass Media Complete, CINAHL, SAGE Full-Text Collection, Cochrane Library, GoogleScholar, GoogleBooks ! Keywords: “kind of literacy” together with “theory”, or “measurement”, or “model”, or “review” (where “kind of” was replaced with literacy domain) ! Inclusion criteria: English language; up to February 2010 Camerini A.L. et al., 2011 Schulz: Health literacy in the information age. IRiSS 2013 3" 3 Results: Number of unique references* Schulz: Health literacy in the information age. IRiSS 2013 4" Results: Dimensions included in concepts of other literacy domains (new) media information literacy literacy science/ scientific literacy cultural literacy civic/ political literacy functional literacy x x x x x factual knowledge x x x x x procedural knowledge x x x awareness x x x critical dimension x x affective dimension x attitudes x x x x x x Schulz: Health literacy in the information age. IRiSS 2013 x 5" Health Literacy … “is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (Healthy People 2010) Schulz: Health literacy in the information age. IRiSS 2013 6" Definition of Health Literacy … “is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Healthy People 2010, Institute of Medicine (2004) What are basic health information? How about 'skills' instead of 'services'? Why not 'informed' instead of 'appropriate' health decisions? Schulz: Health literacy in the information age. IRiSS 2013 Why does health literacy matter? Schulz: Health literacy in the information age. IRiSS 2013 8" Literacy and Health Outcomes Health Outcomes/Services " " " " " " " " " " " " " " " " General health Status Hospitalization & Rehospitalization Emergency department use Asthma Control COPD Depression Diabetes control* HIV control* Prostate cancer stage Mammography* Pap smear Pneumococcal immunization Influenza immunization STD screening Cost Mortality Behaviors " " " " " " " Substance abuse Breastfeeding Behavioral problems Adherence to medication* Smoking* Consent Process End-of-life decision making Knowledge " " " " " " " Birth control Pap screening Emergency department instructions Asthma Hypertension Diabetes And many more Schulz: Health literacy in the information age. IRiSS 2013 Towards new concepts of Health Literacy Consensus among scientists and policy makers: ! ! Health literacy is more than functional literacy (reading, writing, and numeracy skills) in the health domain. There is a need for validated measurements to reflect the extended conceptualizations of health literacy. (e.g. Mancuso 2009) Schulz: Health literacy in the information age. IRiSS 2013 10" Health Literacy – a topic also in Europe? ! ! ! Several HL studies, including Switzerland – based on measurements different from S-TOFHLA or REALM Recently, validation studies of S-TOFHLA in German, French and Italian (Connor, Mantwill & Schulz, 2012) and in Dutch (PEC forthcoming). Also in the UK (von Wagner et al., 2007) and Serbia. So far, no direct comparison possible with results from the U.S. Schulz: Health literacy in the information age. IRiSS 2013 11" Results – Reliabilitiy of Measures Reading Numeracy Italian .88 .62 German .73 .33 French .61 .80 Values are Cronbach’s a Schulz: Health literacy in the information age. IRiSS 2013 12" Results – Participants answering the reading comprehension passages correctly German Italian French Scores (correct answers) n % n % n % Inadequate 0-16 9 3.6 58 21.2 16 11.7 Marginal 17-22 7 2.8 33 12.1 7 5.1 Adequate 23-36 233 93.6 182 66.7 114 83.2 249 100.0 273 100.0 137 100.0 Health literacy Schulz: Health literacy in the information age. IRiSS 2013 13" Expanding the concept of Health Literacy What type of information does the patient need to build his health literacy? ! ! ! Declarative knowledge (knowledge of the what) e.g. explanation of what a certain condition is (use of antibiotics) Procedural knowledge (knowledge of the how) e.g. how to maintain a healthy bodyweight through calorie restriction and exercise; Judgment skills: the ability to relate knowledge to her goals, particularly in novel situations (e.g. self-medication) Schulz: Health literacy in the information age. IRiSS 2013 14" Broader concept of Health Literacy Schulz & Nakamoto 2005 Medical Expertise Judgment Skills Procedural Knowledge Patient Literacy Declarative Knowledge Functional Literacy Schulz: Health literacy in the information age. IRiSS 2013 15" Limits of Health Literacy “Someday, you’ll act like you understand.” Schulz: Health literacy in the information age. IRiSS 2013 16" Patients’ empowerment Three views on empowerment 1. 2. 3. Normative view: through more egalitarian structures and a better distribution of power patients will increase their participation (Bhopal and White 1993; Sherwin 1992) Health policy view: patients’ empowerment will help to control healthcare costs (Neuhauser, 2003) Medical view: Empowering patients will lead to better health outcomes (Edwards, Davies, and Edwards 2008). Schulz: Health literacy in the information age. IRiSS 2013 17" Dimensions of patients’ empowerment ! Meaningfulness: relevance of managing one’s disease ! Competence: sense of competence to manage one’s disease ! Self-determination: sense of autonomy to manage one’s disease ! Impact: sense of control over the outcome of disease management (Based on Thomas & Velthouse, 1990; Spreitzer, 1995) Schulz: Health literacy in the information age. IRiSS 2013 18" Health Literacy & Empowerment Elements of Health Empowerment Volitional Components: Literacy Components: Relevance Competence Self-Determination Impact Declarative & procedural Knowledge; Judgmental skills Sources/Influencers: Lay sources Mass Media (& Internet) Government Health Professionals Decisions( Effects: Constructive & Destructive Activities Health Status Quality of Life Schulz & Nakamoto, 2012 PEC Schulz: Health literacy in the information age. IRiSS 2013 19" Literacy, empowerment, and Patient Behavior Psychological Empowerment Low High Low High-needs Patient Dangerous Self-manager High Needlessly Dependent Patient Effective Self-manager Health Literacy Schulz: Health literacy in the information age. IRiSS 2013 20" Can web-support increase the level of health literacy and empowerment? The(poor(diabe0c(website,(2011( Schulz: Health literacy in the information age. IRiSS 2013 21 Health Literacy & Empowerment Elements of Health Empowerment Volitional Components: Relevance Competence SelfDetermination Impact Camerini & Schulz, & 2012 JMIR Literacy Components: Decl. knowledge Proc. knowledge Judgmental skills Decisions( Sources/Influencers:( Lay"sources" Mass"Media"(&"Internet)" Government" Health"Professionals" Effects:( Construc4ve"&"Destruc4ve"Ac4vi4es" Health"Status" Quality"of"Life" Schulz: Health literacy in the information age. IRiSS 2013 22" www.oneself.ch Schulz: Health literacy in the information age. IRiSS 2013 HL model implementation Sec$ons( ( Health(literacy(levels( Declara4ve" knowledge" Radio" x" Library" x" Gym" Procedural" knowledge" Integra4on"with" existence"and" goals" x" x" Forum" x" Chat" x" The"Specialist"Answers" x" TellUaUStory" x" Schulz: Health literacy in the information age. IRiSS 2013 eHealth effects on Health Literacy & Empowerment Camerini & Schulz, 2012 JMIR Schulz: Health literacy in the information age. IRiSS 2013 25" Methods Experimental study: 165 FMS patients were randomized in 3 groups/conditions: Group 1: patients were provided with a static version of ONESELF (baseline) Group 2: patients were provided with an interactive-only version of ONESELF Group 3: patients were provided with the full-fledged version of ONESELF They completed a pre-test and a post-test after 5 months of navigation. Cross-sectional study ! ! 209 patients registered to ONESELF were recruited and asked to complete a cross-sectional survey. The cross-sectional study was conducted 5 months after the end of the experiment. Schulz: Health literacy in the information age. IRiSS 2013 26" eHealth effects on Health Literacy & Empowerment Camerini & Schulz, 2012 JMIRc Schulz: Health literacy in the information age. IRiSS 2013 27" Direct effects of the eHealth intervention ! ! Strongest impact of the eHealth intervention was on the empowerment dimensions of meaning, competence, and impact. Knowledge and self-determination were not affected. This is likely due to the specific patients involved in the study: ! FMS patients in the sample had been suffering for 6 years on average. ! FMS is regarded as a fatality rather than as a causally predictable event. Schulz: Health literacy in the information age. IRiSS 2013 28" “I expect you all to be independent, innovative, critical thinkers who will do exactly as I say!” Schulz: Health literacy in the information age. IRiSS 2013 Internet and the Limits of Health Literacy Empowerment raises the problem of patient action based on: • Insufficient information • Inaccurate information • Misuse of information Schulz: Health literacy in the information age. IRiSS 2013 30" Internet and the Limits of Health Literacy ! ! ! ! Available information on the Internet assists patients and consumers in making healthcare decisions. Even if the information is of high quality: it is neither universal (e.g. most side effects are rare) nor is it tailored to the patient. Medications are not suitable for all patients; even when they are, they will not be effective for all patients. Information lacks any calibration of probabilities of effectiveness etc. to specific patients. Schulz: Health literacy in the information age. IRiSS 2013 31" The importance of background knowledge ! The utility of health information depends on the recipient’s background knowledge that is necessary for understanding the new information and evaluating it adequately. ! Background knowledge is: # # # # a form of non-declarative knowledge, a form of individual dispositions such as experience specific to a field necessary to assess situations adequately required because related information has to be understood and considered in behavioral decisions. ! Information placed before a different background knowledge (physician versus patient) has a different impact. Schulz: Health literacy in the information age. IRiSS 2013 32" Patients’ expertise and the Internet ! ! ! ! Patient’s unique expertise is in the specifics of their symptoms, their experience of the health condition, and their health goals. A problem arises when a patient receives information that she cannot assess adequately. The Internet is ill-constituted as a decision support for the patient: its flexibility makes it dangerous. The patient’s own preferences, wishes, and predilections will govern information search: this might lead a patient to build a knowledge structure oriented to their wishes rather than reality. Schulz: Health literacy in the information age. IRiSS 2013 33" The Internet and Empowerment ! Need: search tools and websites that, rather than pretending to support medical decisions, relate the criteria that have to be considered in health decisions ! E.G.: description of medication: Information has to be detailed into (1) the decision to treat the condition by medication or other measures (improved diet, exercise, etc.), (2) the decision to prescribe a particular type of medication (3) the decision to choose a particular drug. ! Avoid easy but dangerous choices Schulz: Health literacy in the information age. IRiSS 2013 34" Custom Search: Between Bad Literacy and Guided Navigation ! Experiment to study the effect of quality and biased Internet sites ! Subject: Trust in, knowledge of and attitudes to vaccination (MMR) ! Three groups: (1) normal Google; (2) Google manipulated to find good quality sites, evaluated by HON code; (3) Google manipulated to find anti-vaccination sites ! Pre-post-test with 39 students, were given 12 minutes to find information ! Measures: trust, knowledge. attitudes, perception of quality and bias Schulz: Health literacy in the information age. IRiSS 2013 35" Custom Search: Between Bad Literacy and Guided Navigation ! Students to whom the search engine offered high-quality sites (Group 2) learned more... ! … and rated the importance of vaccination and its effectiveness against swine flu higher than the other groups. ! Students to whom the search engine offered biased antivaccination sites (Group 3) became more concerned about vaccination side effects and more convinced of its harms than the other groups. ! The beneficial effects of high-quality sites and the detrimental effects of biased occurred irrespective of subjects’ subjective assessment of site quality and site bias. Schulz: Health literacy in the information age. IRiSS 2013 36" Concluding remarks Health Literacy – a topic that requires further research in social sciences ! Broader concept: the interplay between health literacy and volitional empowerment is critical to patients’ autonomy. ! ! Two different directions for future research in Health Literacy: ! (1) Improving information material ! (2) Focus on the patient as active consumer ! The guided literacy presents new challenges for health professionals and web content providers. ! Schulz: Health literacy in the information age. IRiSS 2013 37" The ICH group 3.12.12" Funding support: Swiss National Science Foundation & European Union Presenta4on"Title" 38"