Gap analysis
What the American Cancer Society covers — and where the Life Spark Survivorship Institute fills the gap.
The ACS is a critical public resource. It is not, however, a longitudinal survivorship record or a clinician workflow. This page is our honest read of what ACS provides today and what we're building to complement it — including how we deliver clinical-grade tooling without needing HIPAA-covered infrastructure on day one.
What ACS provides
- General education libraries (side effects, nutrition, exercise) at cancer.org
- 24/7 information line (1-800-227-2345) and the Cancer Survivors Network peer forum
- Road To Recovery transportation and Hope Lodge lodging referrals (regional)
- The ACS CARES app — a directory-and-education companion for patients and caregivers
- Screening and prevention guidelines, funded research, and public advocacy
Sources: cancer.org, ACS CARES app (Google Play / App Store), Cancer Survivors Network.
What it doesn't
- A persistent longitudinal record of symptoms, distress, cognition, sleep, and late effects
- A structured transition-of-care plan that survives payer, address, and clinician changes
- Clinician-facing trend dashboards with escalation bands (their reach is patient-education, not workflow)
- PRO instruments (NCCN Distress, PHQ-2/GAD-2, FACT-Cog-style, COST-FT) with historical charts
- FHIR R4 export with consent scoping so a survivor can hand a next physician a real bundle
- Cohort-level outcome measurement tied to identifiable survivorship KPIs
- 18-and-beyond transition tooling for AYA / pediatric-cancer graduates aging out of PHO
Where Life Spark is additive
Longitudinal PROs, not one-off education
Survivors log distress, sleep, cognition, and sexual health repeatedly. The record trends — a single ACS pamphlet does not.
Transition-plan PDF the next clinician will actually read
One-click export compiled from tool logs, red flags, and COG-LTFU / NCCN cited surveillance — hand-off ready.
Clinician workspace with escalation bands
CSPN-verified PCPs see population trends and case timelines; ACS does not staff clinical review.
FHIR R4 export with revocable consent
LOINC-coded Observation bundles the survivor owns — portable across health systems, none of it locked in one EHR.
Cohort impact measurement
Annual cohort dashboards for plan completion, surveillance follow-through, and PRO trajectory — real accountability.
Maximizing impact without HIPAA — the playbook
How we ship clinical-grade tooling before a BAA is in place.
HIPAA attaches to covered entities and their business associates handling PHI. Until we're operating a covered-entity workflow (treating clinic, payer integration, EHR data feed), we scope the platform so survivors get real longitudinal value with data they own.
- 1
Your data, held privately — not covered-entity PHI
Data is entered by the survivor into their own account. My Life Spark P.C. is not (yet) a HIPAA-covered entity handling PHI as a treating provider or business associate — so users control the record and can export or delete it at will.
- 2
De-identified defaults for aggregate views
Cohort dashboards aggregate only KPI events with a cohort tag (e.g. `breast`, `aya`) — never row-level identifiers. Admins see counts and rates, not names or diagnoses tied to individuals.
- 3
Consent-scoped clinician sharing
When a survivor invites a clinician, they choose categories (symptoms, PROs, meds) and duration. Sharing is a survivor act, not a business-associate transfer.
- 4
No claims data, no diagnosis codes we didn't earn
We do not pull 837/835 claims, do not attempt payer integrations, and do not accept EHR-sourced PHI feeds — all the surfaces that would trigger HIPAA obligations we don't yet meet.
- 5
Row-level security + PHI access audit
Even without HIPAA, every clinician read/export is logged and survivor-visible — the same posture a BAA would eventually require, applied preemptively.
- 6
Education & tools framed as self-management
Every recommendation is cited to public guidance (NCCN, ASCO, COG-LTFU) and framed as decision-support the survivor takes to their clinician — not a diagnosis or a treatment order.
- 7
Path to HIPAA when it's needed
The architecture (RLS, audit log, consent scopes, FHIR bundles, role separation) is HIPAA-shaped. A future BAA with a partner health system or franchise clinic lets us light up covered-entity workflows without rebuilding.
This is not legal advice. See /hipaa-readiness for our current posture and the path to a BAA when a partner requires it.