3.3 Health Literacy, Communication & Patient Advocacy
Key Takeaways
- Healthy People 2030 defines personal health literacy as the degree to which individuals can find, understand, and use information and services to inform health-related decisions, and organizational health literacy as the degree to which organizations equitably enable that process.
- AHRQ Health Literacy Universal Precautions (Toolkit, 3rd edition, 2024) structure every encounter for all patients: plain language, three key points, teach-back with chunk-and-check—not a brochure in the backpack.
- Numeracy is part of literacy: explain a 2% risk as “2 out of 100 athletes like you,” not an unexplained percentage or relative-risk slogan.
- Informed consent is a process (risks, benefits, alternatives, questions); a signed consent-to-treat form is not the same thing; implied consent covers unresponsive emergency care when delay threatens life or limb.
- Advocacy is PA8 0103 in action: concussion-law compliance (Lystedt-style remove-and-written-clearance), AED access, and NCAA sickle cell trait screening policy (test, documented prior result, or informed waiver)—not handing out pamphlets.
Health literacy is Domain I task 0103. Healthy People 2030 split the concept in two. Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. Organizational health literacy is the degree to which organizations equitably enable people to do the same. The Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit, 3rd Edition (AHRQ Publication No. 23-0075, 2024) treats literacy the way we treat bloodborne pathogens: you cannot reliably spot who is “low literacy,” so you simplify communication and confirm understanding with everyone.
Health literacy is not “giving a brochure.” A PDF in a backpack, a 12th-grade consent form, or a coach shouting “you’re out with a concussion” without explaining why and what happens next does not meet 0103.
Plain Language, Jargon, and Cultural Fit
Plain language (National Institutes of Health Plain Language Initiative) is clear wording that tells the audience what they need to know without extra words. It is not dumbing down and not unprofessional. Spell out anterior cruciate ligament (ACL) once, then say “the ACL, the ligament in the middle of the knee that keeps the shin from sliding.” Avoid stacked abbreviations: “RTP after SRC per the Zurich CRT-5” is a literacy failure even if every letter is technically correct.
Practical rules that match AHRQ Tool 4 (Communicate Clearly) and family-medicine summaries of the toolkit:
- Limit the visit to three key points.
- Use the words the patient already used.
- Slow down; short sentences.
- Lead with the action: “Do not play today. See the physician. Bring a parent.”
- Match language and culture: qualified interpreter for limited English proficiency—not the point guard, not Google Translate for consent. Respect beliefs about pain, touching, and who may hear a diagnosis (parent, guardian, partner).
- Written materials: everyday words, white space, active voice, pictures of the behavior (how to do a straight-leg raise), not clip-art of a smiling knee.
Teach-Back (AHRQ Tool 5)
Teach-back asks the patient to say in their own words what they need to know or do. It checks whether you explained clearly, not whether the athlete is intelligent. The related show-me method has the patient demonstrate a brace strap or inhaler.
How to do it:
- Prime with humility: “I want to make sure I explained this clearly.”
- Chunk and check: do not dump a 20-minute ACL protocol and quiz at the door. Teach crutch gait, hear it back, then ice/elevation, hear it back.
- Ask for the plan, not yes/no: “When you get home, what will you do for swelling?” never “Any questions?” and never “You understand, right?”
- If teach-back fails, you re-explain with a different analogy, then check again. Repeated failures are a signal to change your wording (AHRQ/Always Use Teach-Back).
Numeracy: Explaining a 2% Risk
Numeracy is the ability to use numbers in health decisions. “Your risk is 2%” is meaningless to many athletes and most parents. Better:
- Natural frequencies: “If 100 athletes like you have this surgery, about 2 will have a graft problem in the first year, and 98 will not.”
- Give absolute risk, not only relative risk. “Cuts risk in half” when baseline is 2% means 1 in 100, not a coin flip.
- Time-box the number: “2 in 100 over the next season,” not a lifetime smear.
- Pair the number with the decision: “That 2% is why we still do the home program even when the knee ‘feels fine.’”
Shared Decision-Making and the Three Consents
Shared decision-making is a conversation: the AT/physician brings evidence and options; the patient (and parent, when the athlete is a minor) brings values (season timing, surgery aversion, sport identity). It is required when more than one reasonable path exists (nonoperative vs ACL reconstruction in a low-demand senior; brace vs tape).
Distinguish three consent ideas the exam loves to mash together:
| Type | What it is | When it applies |
|---|---|---|
| Informed consent | A process: diagnosis in plain language, proposed intervention, risks, benefits, reasonable alternatives (including no treatment), chance to ask questions, voluntary decision | Surgery, research, invasive procedures, some imaging/injections; documented in the record |
| Consent to treat | Pre-participation authorization for the AT to evaluate and provide ordinary care (taping, modalities, first aid) | Signed by athlete/parent at the start of the season; does not replace informed consent for a new invasive plan |
| Implied consent | Society assumes a reasonable person would want rescue if they cannot speak | Unresponsive or impaired athlete in an emergency when delay risks life or limb (airway, CPR, bleeding control, spinal motion restriction). Still tell the conscious athlete what you are doing |
Minors: a parent/guardian generally consents; the athlete still gets an age-appropriate explanation (assent). Emergency implied consent still applies if the guardian is not present and waiting would cause harm. A pre-signed consent-to-treat card does not authorize you to start an experimental injection series without a new informed-consent process.
Educating Parents, Coaches, and Administrators
Literacy work is not only one-to-one with the athlete. Coaches need action rules (“no same-day return after suspected concussion”). Parents need the home program they can actually run (times of day, equipment they own). Administrators need the policy ask in one page: budget for AEDs that meet the 3-minute standard, a written lightning plan that names the safe building, and staff time to rehearse the EAP. Use the same plain-language and teach-back habits in a coaches’ meeting that you use in the AT room.
Advocacy (Still 0103)
Advocacy is using professional standing so the system is safer:
- Concussion laws: Washington’s Lystedt Law (2009) was the first comprehensive U.S. youth concussion statute: remove the athlete, notify parents, written medical clearance before return. All 50 states and D.C. subsequently enacted youth concussion legislation with the same core (exact wording varies). The AT’s job is to implement the law, not to invent a “tough it out” exception for playoffs.
- AED access: lobby for devices and unlocked cabinets that meet the 3-minute retrieval standard, plus trained responders at after-hours facilities.
- Sickle cell trait (SCT) screening: NCAA Division I required confirmation of SCT status for incoming athletes effective 2010–11 (solubility test, documented prior result, or informed waiver after education). Divisions II and III followed (DIII incoming 2013–14, all athletes by 2014–15). NATA still emphasizes universal heat/exertion precautions (paced conditioning, rest, hydration, emergency recognition) because screening without workout modification does not prevent collapse. The American Society of Hematology opposed mandatory disclosure as a participation prerequisite; the exam still expects you to know the NCAA policy options and to educate without stigma.
Poor Versus High-Literacy Explanations
If the athlete cannot teach the plan back, the explanation failed—regardless of how complete it sounded to you.
| Topic | Poor literacy (jargon dump) | High literacy (plain language + action + check) |
|---|---|---|
| Concussion | “You have a SRC; no RTP until you clear the protocol and the CRT is normal. Second-impact syndrome is a risk.” | “You had a concussion—a brain injury from the hit. You will not practice or play today. A licensed provider must give written OK before you return. Going back too soon can make symptoms worse and, rarely, be life-threatening. Tell me what you will do if a headache comes back at home.” |
| ACL rehab week 1 | “Initiate open- and closed-chain quadriceps recruitment, protect the graft, and maintain ROM 0–90.” | “The new ligament is like a rope that needs 9 or more months to get strong. This week: ice 15–20 minutes after exercises, pump the ankle to limit swelling, and straighten the knee all the way. Show me the quad set. What three things will you do tonight?” |
| 2% infection risk | “There’s a two-percent chance of septic complications.” | “If 100 people have this procedure, about 2 get a serious infection and 98 do not. That is why we keep the wound clean and call for fever or spreading redness. What temperature would make you call us?” |
Organizational literacy means the school, not the 16-year-old, owns the translation: short after-visit summaries, teach-back as clinic policy, interpreters, and forms written at a usable reading level. Task 0103 is passed when the decision (sit out, consent, home exercise, waiver) is informed—not when a brochure was issued.
Which statement best matches Healthy People 2030 and AHRQ health-literacy universal precautions for PA8 task 0103?
An athletic trainer finishes a concussion home-care talk and wants to apply the AHRQ teach-back method. Which approach is correct?
A gymnast is unresponsive after a vault landing. The athletic trainer begins airway management and cervical-spine motion restriction while EMS is called. Which consent concept applies?