👋Tell us about you
Tell us about you
A few quick questions help us tailor your journey and surface the next Prepared Patient course you'd benefit from. Saved on this device only. Future versions will sync from your medical record (FHIR Condition import).
🩺 Other conditions you have (alongside SCD)
Check any that apply. We'll recommend matching Prepared Patient courses below.
💛 Someone you care about
Caring for a loved one with another illness or condition? We'll point you at Prepared Family Member content that helps you support them.
Future state: when FHIR Condition import is live, this section will pre-populate from your medical record. You'll always be able to edit.
🎯Your Next Goals
Your Next Goals
Each Prepared Patient course is built like this one — 10 evidence-based competencies, the same Force Field framework, certification at the end. Finish your SCD course; then pick the next one that matches you (or the person you care for).
📍Local to You
Local to You
Your sickle cell journey lives in a place. Enter your ZIP and we'll pull regional SCD resources — the comprehensive SCD center nearest you, the SCDAA chapter, Day Hospital options, mental health, food access, and pharmacy support — curated through the FFH PHIT (Population Health Intelligence Tracker) network. Edit any line; we save it on this device.
PHIT data: clinic locations from HRSA + CMS · environmental context from EPA AirNow · food access from USDA · social vulnerability from CDC SVI · FFH-curated SCDAA & community partner programs.
🏅Your Path to Certification
Your Path to Certification
Earn your way up three evidence-based tiers. Each builds on the last. Finish all three and receive your Certified Prepared Patient · Sickle Cell Disease badge and printable certificate, recognized across the FFH Network.
Aware · Identity: Self-Advocate
You know your body and your disease. Layer 1 — Condition Literacy.
- Complete Modules 1–4 (Condition Literacy)
- Pass the "Know My SCD" quiz (80%)
- Identify your genotype (HbSS, HbSC, HbSβ⁰, HbSβ⁺)
- Build your home pain plan + trigger list
Active · Identity: Care Team Member
You partner with your team and navigate the system. Layer 2 — Care & System Literacy.
- Complete Modules 5–7 (Visits · Team · Insurance/Referrals)
- Demonstrate teach-back on hydroxyurea
- Complete one "great visit" prep + debrief
- Build your When-to-Call plan + Care Team card
- Successfully resolve one prior auth or referral
Certified Prepared Patient · Identity: Ambassador
You teach, mentor, fight stigma, and shape research & policy. Layer 3 — Advocacy & Ambassadorship.
- Complete Modules 8–10 (Stigma · Teach/Mentor · Research/Policy)
- Mentor 1 person OR present at a support group / school
- Sign the Prepared Patient Pledge
- Generate & share your Health Passport
- Submit one advocacy action (legislator letter, trial review, board nomination, or policy comment)
📋Master Pre / Post Assessment
Where You Stand — Confidence Before & After
Seven dimensions of being a Prepared Patient. Answer once at the start of your journey and again at the end. Your goal is to see real growth across understanding, self-management, communication, and optimal utilization — knowing when to call your team, when to use Day Hospital, and when to go to the ER. Your answers stay on this device unless you choose to share with your clinician.
📈 Your Pre→Post Growth
📞Know Who to Call — Before the ER
Know Who to Call — Before the ER
For most non-life-threatening SCD events, your specialty team can help faster than the ER and prevent unnecessary admissions. Save these numbers in your phone today. The numbers below are placeholders — your institution will fill in the right ones for you.
🌡️ Fever ≥ 101°F (38.5°C) — call within 1 hour
People with SCD are at high risk for serious infection. Don't wait, don't drive to the ER first. Call [Hematology On-Call: (555) 222-9000] 24/7. They'll tell you if you can come to [Day Hospital, 3rd floor, M–F 7a–9p] or need to go to ER. Bring your Health Passport.
🩹 Pain crisis you can't break at home — call before going anywhere
Try your home plan first (heat, hydration, scheduled meds, breathing). If pain is still ≥ 6/10 after [2 hours], call [SCD Day Hospital: (555) 222-9100]. They can usually treat you faster than the ER and avoid a hospital stay.
💬 Routine questions, refills, scheduling
Use [MyChart portal] first — most messages answered within 1 business day. For meds about to run out, call [SCD pharmacy line: (555) 222-9050].
🚑 Call 911 right away for any of these
Sudden weakness on one side · trouble speaking · vision change · chest pain or trouble breathing · fainting · a painful erection lasting > 4 hours (priapism) · severe headache. These can be stroke, acute chest syndrome, or other emergencies — don't drive yourself.
📚The 10 Prepared Patient Competencies
A Prepared Patient builds three kinds of health literacy — and grows into three identities. Each competency works through the FFH three pillars: Learn It · Live It · Share It.
Advocate for Self
You speak up for your own care, plan, pain, and goals.
Care Team Member
You partner with your team — not above, not below.
Ambassador
You teach, mentor, and shape research, policy & access.
🧬 Condition Literacy Learn It · Tier 1 Aware
"I know my body and my disease." The foundation. Without this, nothing else holds.
Know My Sickle Cell
What SCD is, your specific type (HbSS / HbSC / HbSβ⁰ / HbSβ⁺), why pain happens, organs at risk, your unique baseline.
Master My Meds & Devices
Hydroxyurea, voxelotor, crizanlizumab, L-glutamine, opioids, vaccines, port care, infusion-pump teach-back.
Spot Red Flags Early
Fever, splenic sequestration, acute chest, stroke signs, priapism, anemia worsening — before they become emergencies.
Lifestyle, Triggers & Mind-Body
Hydration, temperature, altitude, sleep, exercise, school/work, dental, eyes — and the mental-health side: anxiety, depression, opioid stigma, peer support, transition to adult care.
🤝 Care & System Literacy Live It · Tier 2 Active
"I'm part of the team. I navigate the system." Where most preventable ER visits, readmissions, and frustration happen — and where this course pays off the most. Optimal utilization lives here.
Make Every Visit Count
Visit prep, your top-3 questions, teach-back to the doctor, decision aids, "what are we deciding today?", debrief and follow-up.
Work as Part of the Care Team
You are a member, not the audience. Know each role (hem, RN, pharmacist, social work, PT, peer mentor), how decisions get made, how to bring data, and how to disagree productively. Use the SHARE Approach the way your doctor does.
Navigate Insurance, Referrals & Costs
How to read an EOB, get a prior authorization unstuck, request a second opinion, find financial assistance, change plans during open enrollment, and avoid surprise bills. Includes 360 SCD Hub navigator help.
📣 Advocacy & Ambassadorship Share It · Tier 3 Certified
"I speak up. I lift others. I shape the future." This is what turns a Prepared Patient into a force multiplier for the whole community.
Stigma, Equity & Access
SCD has been historically under-funded and under-treated. Learn the patterns of bias in ERs, schools, and workplaces — and how to name them, document them, and respond. Know your ADA / 504 / FMLA rights.
Teach, Mentor & Be the Ambassador
Teach a sibling, a friend, an EMT, or a teacher in 3 minutes. Mentor a newly diagnosed family. Speak at a support group, a school, or an Academy event. Modify your environment so others succeed too.
Research, Trials & Policy Voice
How clinical trials work, how to evaluate one for yourself, what gene therapy access looks like, how to comment on policy, contact a legislator, or join a patient advisory board. The world of SCD research moves faster when patients are at the table.
🩸Form & Function — Sickle Cell Disease in 3D
Form & Function — Sickle Cell Disease in 3D
SCD is a shape-of-the-cell disease — a single amino-acid swap in the β-globin gene turns smooth, flexible red blood cells into rigid, sickled crescents. Those misshapen cells jam in small vessels (vaso-occlusion) and break apart faster than the marrow can replace them (chronic hemolytic anemia). Knowing where this happens in your body makes every other module make sense.
🩸 Red blood cells & vessels
Hemoglobin S polymerizes under low oxygen → cells sickle, get stiff, jam vessels. Hydroxyurea raises HbF and reduces sickling. Hydration + warmth keep cells flexible.
🦠 Spleen
Damaged early in life by repeated micro-infarcts → functional asplenia → high infection risk. Daily penicillin to age 5+; full pneumococcal/meningococcal vaccination for life.
🫁 Lungs
Acute Chest Syndrome — sickling in pulmonary vessels + infection + atelectasis. Top cause of SCD adult mortality. Watch for chest pain, fever, hypoxia → ED.
🧠 Brain
Silent & overt strokes, especially in pediatric HbSS. TCD screening ages 2–16; chronic transfusion if velocity is high. Cognitive deficits often missed.
🦴 Bone marrow & joints
Vaso-occlusion in bone → pain crises (the hallmark). Avascular necrosis of hips and shoulders is common in adults. Pain is real — treat it on protocol.
🫘 Kidneys
Hypertonic medulla traps sickle cells → progressive loss of urine concentration, then proteinuria, then CKD. Annual UACR + eGFR; ACE/ARB at first sign of albumin.
💡 How we manage it (the through-line)
Five levers, in order: (1) Disease-modifying therapy — hydroxyurea (raises HbF), L-glutamine, crizanlizumab, voxelotor, and for some patients gene therapy (Casgevy/Lyfgenia 2023). (2) Infection prevention — daily penicillin in early childhood; full vaccinations for life. (3) Hydration + warmth + oxygen — keep cells flexible, prevent sickling. (4) Pain plan — on-protocol opioids for acute crises (no second-class care). (5) Annual surveillance — TCD (peds), eye exam, kidney labs, sleep apnea screen, mental health.
🧰Training Lab — Devices & Techniques
Training Lab — Devices & Techniques
Hands-on practice with the devices and techniques every Prepared Patient · SCD eventually masters: thermometer, pulse oximeter, port care, hydration tracking, and the pain plan in action. Each skill follows the FFH 5-step rhythm — Introduce → Coach → Practice → Train → Test.
This section is in active development — the FFH Training Lab is being purpose-built to host SCD device training (and every other condition's). When it lands, this slot will surface the full hands-on lab inline. For now, talk to your team about the device skills you'll need to master and we'll have them queued up here shortly.
👥My Care Team
My Care Team
Your team is bigger than just the doctor. Click any card to edit, or click the + tile to add a new team member. Saved on this device. The Force Field Emergency Card below auto-syncs from this list.
📖Glossary — words you'll hear
Plain-English definitions for terms doctors and labs use. Tap to expand.
Hydroxyurea (Droxia, Siklos)
Goal: HbF > 20% for many patients.Voxelotor (Oxbryta), Crizanlizumab (Adakveo), L-glutamine (Endari)
Acute Chest Syndrome (ACS)
Splenic Sequestration
Priapism
Transcranial Doppler (TCD)
Reticulocyte count (retic)
Genotype: HbSS, HbSC, HbSβ⁰, HbSβ⁺
Curative options: HCT & gene therapy
"Adult care transition" (ages 14–25)
🧪Lab Test Tutor — what your numbers mean
Lab Test Tutor — what your numbers mean
Don't just see a number — know what it means and what to ask. Your "normal" may be different from a friend's. Ask your hematologist to write your personal baseline in the column on the right.
| Test | What it measures | Typical adult range | What to ask if it's off | My baseline |
|---|---|---|---|---|
| Hemoglobin (Hgb) | How much oxygen-carrying protein you have. | SCD adults often run 6–9 g/dL | Is this drop > 2 from my baseline? | [fill in] |
| Reticulocyte % | New red cells your marrow is making. | SCD: usually 5–20% | If LOW with anemia — parvovirus screen? | [fill in] |
| HbF (fetal hemoglobin) | Best protective hemoglobin. Hydroxyurea raises it. | Goal often > 20% | Should we increase hydroxyurea? | [fill in] |
| LDH | Marker of red cell breakdown. | Often elevated in SCD | Is mine higher than my baseline today? | [fill in] |
| Ferritin | Iron stores — high after many transfusions. | < 1000 ng/mL ideal | Do I need an iron-removal medicine? | [fill in] |
| Creatinine / GFR | Kidney function. | GFR > 90 normal | Should I avoid NSAIDs? | [fill in] |
| Urine albumin | Early kidney damage signal. | < 30 mg/g normal | Should I start an ACE/ARB? | [fill in] |
| O₂ saturation | How well your lungs deliver oxygen. | ≥ 95% in clinic | Is mine running low? Sleep study? | [fill in] |
➕Add-On Modules & Earnable Badges
Add-On Modules & Earnable Badges
Stackable modules that match your situation. Complete one to earn an extra badge on your certificate. Your institution can add their own.
👶 Pregnancy with SCD
Pre-conception counseling, transfusion strategy, anesthesia plan, postpartum risks.
🌱 Transition to Adult Care
Ages 14–25. Build your portable summary and meet your adult team.
🧪 In a Clinical Trial?
Add: protocol literacy, side-effect tracking, when to call the study coordinator vs your usual team.
💉 Considering Gene Therapy / HCT
Eligibility, fertility preservation, what the conditioning weeks look like, follow-up.
✈️ Travel & SCD
Altitude, dehydration, cold, time-zone meds, packing your Passport, finding a hospital abroad.
🎓 At School / At Work
Sample 504 plans, ADA accommodations, cooling breaks, how to talk to teachers/HR.
👨👩👧 For Caregivers & Siblings
How to feel for the spleen, what to put in the go-bag, taking care of yourself.
+ Add Your Institution's Module
Drop in your own — chemo ed, infusion-pump training, port-access teach-back, anything.
🛡️Force Field Emergency Card — fridge · wallet · EMT-ready
🛡️ Force Field Emergency Card FRIDGE · WALLET · EMT-READY
A one-page emergency record for any EMT, ER, new doctor, or transition visit. Print one for the fridge, one for your wallet. Updates anytime. This is the document you hand to a stranger when you can't speak for yourself.
🤝 My Care Team — call list for any clinician picking up my care
📘My Health Passport — visit log · questions · trackers
📘 My Health Passport PATIENT-OWNED JOURNAL
This is your record — not your hospital's. Log every visit, capture every question for next time, and watch your own trends. Many of you get care at more than one hospital, on more than one record system. This Passport travels with you. Future versions will let you import data directly from your patient portals (the "Blue Button" vision).
🩺Working With a Prepared Patient
Your patient is going through a structured, evidence-based course. Here's how to get the most out of every visit, reduce ER use, and partner well. Built on the AHRQ SHARE Approach, the IOM teach-back method, and the 2014 NHLBI & 2020 ASH SCD guidelines.
The SHARE Approach — your 5-step playbook
Use these steps in any order. Cycle back. Use teach-back at every transition. Source: AHRQ Pub. No. 25-0005 (Oct 2024).
💬Teach-Back & Risk Communication
The two highest-yield, lowest-cost SDM techniques. Use both at every visit.
🔁 Teach-Back (1–2 min)
- "Just so I know I explained it well — what would you tell your sister about why we're starting hydroxyurea?"
- Open-ended ("what" / "how"), not yes/no.
- If they get it wrong: "I must not have explained it well — let me try a different way." Then teach-back again.
- Use it for: pain plan, hydroxyurea ramp-up, when to call you vs ER, fever rule, port-flush technique.
- Document teach-back in your note — it's a quality measure and a billable element of care.
🔢 Communicating Numbers
- Use absolute risk, not relative. "13 out of 100" beats "13%" beats "1 in 8" beats "low risk."
- Keep denominators & timeframes constant when comparing options.
- Show, don't tell: icon arrays, Wong-Baker FACES, written summary.
- For lab numbers: give the action threshold, not just the value. "Your ferritin is 1,200 — over 1,000 we usually start iron removal."
⚠️SCD-Specific Clinical Guardrails
Do these every visit. Skipping them is the most common reason a Prepared Patient ends up in the ER.
🟢 Every Visit Checklist
- Confirm hydroxyurea dose & HbF goal; ramp to MTD if labs allow.
- Pain plan: home opioid script, when to escalate, no NSAIDs if GFR < 60.
- Pneumococcal, meningococcal (ACWY + B), influenza, COVID, Hib up to date.
- Eye exam yearly (proliferative retinopathy — esp. HbSC).
- BP and urine albumin every visit; ACE/ARB if > 30 mg/g.
- Mental health screen (PHQ-2/9 + GAD-7); pain ≠ depression but they coexist.
🚨 Red-Flag Triage Patients Should Know
- Fever ≥ 101°F → assess within 1 hour (CBC, blood culture, broad-spectrum if criteria met).
- Pain + cough/fever/low O₂ → CXR, sat, transfuse threshold, incentive spirometry.
- Sudden focal weakness, speech, vision → stroke pathway; transfuse to HbS < 30%.
- Priapism > 4 hours → urgent urology + IV fluids + analgesia.
- Pediatric: spleen palpable / pale / lethargic → splenic sequestration.
🌍Cultural Competence & Trust
SCD disproportionately affects Black, Hispanic, Mediterranean, Middle Eastern, and South Asian communities. Many patients have been under-treated or accused of drug-seeking. Repair starts in your office.
- Start with belief. Pain is what the patient says it is. SCD pain is real, severe, and often poorly treated.
- Ask about their model. "What do you think causes a crisis for you? What do you think helps?" Use that language.
- Use qualified medical interpreters — never family, never minor children except in true emergencies.
- Invite the family in. Decisions about transition, transplant, gene therapy, fertility, pregnancy are family decisions in many cultures.
- Name the bias. "I know SCD patients have often been doubted in ERs. We track that here, and you can tell me if it ever happens."
🏥Customize for Your Institution
Clone this course and replace the highlighted blocks with your own information. Each editable field below is a placeholder — change it once and it propagates through the patient view.
📞 What Should Replace the When-to-Call Block
- 24/7 hematology on-call number
- Day Hospital / SCD infusion clinic hours & address
- Specialty pharmacy line
- Behavioral health / crisis line
- Patient portal login URL
👤 Who Is Your "Susan"?
- Name, role, photo, calendly/booking link.
- What teach-back / device check-ins they own (port flushing, infusion pump, hydroxyurea ramp).
- How patients reach them between visits.
📚 Add Your Own Modules
- Your clinical trial protocols (chemo ed, gene therapy run-up).
- Local 504 plan template, school-letter template.
- Insurance & financial-aid pathways.
- Local peer support partners (e.g., 360 SCD Hub, SCD Foundation Arizona).
🎨 Re-skin in 2 Lines of CSS
--inst-primary: your brand color- Replace the FFH × 360 SCD Hub × [Your Institution] cobrand pill in the hero
- Drop in your logo PNG (white version) — same 48px height as FFH logo
📚 Evidence Base — what this course is built on
- AHRQ SHARE Approach — 5-step shared decision making framework. AHRQ Pub. 25-0005, Oct 2024. ahrq.gov/sdm
- AHRQ Health Literacy Universal Precautions Toolkit (3rd ed.) — teach-back, plain language, accessible materials. AHRQ Pub. 23-0075, March 2024.
- NHLBI Evidence-Based Management of SCD: Expert Panel Report (2014) — preventive screening, hydroxyurea, transfusion, infection prevention.
- ASH 2020 Guidelines for SCD — pain (acute & chronic), cerebrovascular disease, transfusion support, stem-cell transplant.
- AHRQ PEMAT — Patient Education Materials Assessment Tool. Used to grade understandability & actionability.
- Stanford Chronic Disease Self-Management Program (CDSMP) — peer-led, self-efficacy backbone of the Tier 3 advocacy work.
- AHRQ Patient Activation Measure (PAM) — the "Aware → Active → Certified" ladder maps to PAM levels 1–4.
- 360 SCD Hub (360scdhub.org) — community partner content, peer mentors, regional resource connections.
- FFH Prepared Patient · Asthma course — sister course in the FFH Academy; this build mirrors its structure for series consistency.
Course content is educational and not a substitute for medical advice from your own clinicians. Institutions cloning this course are responsible for accuracy of all customized blocks.