Sue Stableford - Health literacy, numeracy and shared decisionmaking
Health Literacy, Numeracy and Shared Decisionmaking Sue Stableford, MPH, MSB, Director University of New England Health Literacy Institute Portland, Maine firstname.lastname@example.org
Preview • ACA and shared decisionmaking • Health literacy, numeracy, and risk communication • Challenges and emerging solutions for decision aids • Need for research and action • ResourcesCover: IOM report - Health Literacy Implications for Health Care Reform
Affordable Care Act Sec 3506Program to Facilitate Shared Decision-Making“…facilitate collaborative processes between patients, caregivers or authorized representatives, and clinicians that engages … in decisionmaking, provides … information about trade-offs among treatment options, and facilitates the incorporation of patient preferences and values into the medical plan”
Shared decisionmaking (SDM)• Key concept: “Preference-sensitive” care – Possible harms and benefits closely matched – Patient values play critical role• Decisions: – Screening (e.g. PSA) – Treatment (e.g. breast cancer)• Decision “aids” or “supports”
Shared decisionmaking enhances care quality• Linked with – patient-centered care – safety and quality of care – medical home model of care – patient satisfaction• Do all patients want to share decisions?
Example: Why SDM mattersProstate cancer treatment choices:Wilt T et al. Radical Prostatectomy versusObservation for Localized Prostate Cancer.N Engl J Med, July 2012.– 12 year randomized clinical trial of low-risk disease patients– Surgery did not reduce all-cause or prostate-cancer mortality– Urinary incontinence and erectile dysfunction significantly more common with surgery
Health literacy: Foundation of SDM Capacity to • Read • Write • Compute** • Understand • Communicate • Use health information
Literacy skills of American adults• 43% Basic or below basic prose literacy skills• 55% Basic or below basic numeracy skills Health literacy skills: 12% Proficient
Health literacy affects… everyone Limited • knowledge • skills • time Often, poor • health • vision or hearing • support system
Most vulnerable population groups Adults who are: • Older (esp. ages 65+) • Hispanic/Latino • Immigrants • Poor • Managing a chronic physical or mental health condition
The other half of health literacy: System demands HealthConsumer Literacy Skills Literacy Complex System Demands Challenge Adapted from IOM conceptual framework in “Health Literacy: A Prescription to End Confusion”, 2003
Literacy & numeracy challenges expand in SDM• Amount and complexity of information (cognitive load)• Unfamiliar numeracy concepts (statistical risk)• Uncertainty of outcome applied to self• Emotional complexity• Possible poor health and depression
Helping patients understandUse proven tools and methods 1. Plain language and plain numbers 2. Clear data displays and values clarification strategies 3. Narrative examples 4. ‘Coaching’ and Teachback 5. User engagement www.FDA.gov
1. Plain languageGoal: cognitive effort• Limit content• Structure/organize• Write in clear, everyday terms [‘chances’ instead of ‘risk’]• Design for fast visual access• Consider culture
Example from Making the Choice www.ProstateCancerDecision.org
Plain numbers• Frequencies, maybe % - not decimals, not fractions, not ratios• Baseline risk• Absolute, not just relative, risk• Denominators and time frames constant for comparison• Positive and negative frames Fagerlin A, Zikmund-Fisher B, Ubel P. Helping Patients Decide: Ten Steps to Better Risk Communication. JNCI, 2011. 103:1436-43 Woloshin S and Schwartz LM. Communicating Data About the Benefits and Harms of Treatment: A Randomized Trial. Ann Intern Med, 2012.
Relative vs absolute risk• Relative Risk: – “Patients who used our miracle drug every day increased improved their chances of ___ by 50%.” (no baseline, no timeframe)• Absolute Risk: – “When used daily for a year, our miracle drug increased the chances of ___ from 1 in 100 to 2 in 100” (or from 1% to 2%)
Constant denominators and “framing” • Denominators – Choose 100 or 1000 when possible and use consistently to compare treatments or outcomes • Framing: Positive and negative – “50 out of 1000 women (or 5%) who take this drug get a skin rash. This means that 950 (or 95%) do not.”
2. Visual Displays of DataBest practices – Numbers – Icon display – Simple graph – Instructions on a table From AHRQ consumer booklet: “ACE Inhibitors” and “ARBs” To Protect Your Heart? A Guide for Patients Being Treated for Stable Coronary Heart Disease
Risk chart from Fagerlin, Zikmund-Fisher, Ubel. JNCI, October 2011.
3. Narrative examples framed with care • May help with accurate mental models and ‘gist’ understanding • Can introduce bias • Can overpower data – Disproportionate effect on adults with limited numeracy skills
4. Coaching, Teachback, “Guided Imagery” Verbal exchange structured to maximize understanding • Clinician explains: “Choice, option and decision talk” (Elwyn) • Patient tells or demonstrates • Clinician re-explains as needed • Use of written or media tools (decision aids or DAs)Elwyn G et al. J Gen Intern Med, 2012Wolf M. Chpt 9, Health Literacy, in FDA Guide, Communicating Risks and Benefits
Do “solutions” work? Evidence: “Yes…but” • Understanding with better material design • Understanding risk if consistent denominators and icon displays used • Understanding with professional support
Resource Support• Research literature (Medical Decision Making)• IPDAS – International Patient Decision Aid Standards• Professional and University-based groups – SMDM: Society for Medical Decision Making – Shared decision centers; e.g. Ottawa and Dartmouth• PCORI – Patient-Centered Outcomes Research Institute (ACA)
Summing Up: A Recap• Only 12% of adults have Proficient health literacy skills• Health information with numbers is hard for most to understand• SDM adds extra demands and complexity• Lowering the burden to understand can help patients engage with providers in wiser care choices• Best practice is evolving. We can use current guidelines.