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Lesson 28

Privacy, security & data responsibilitiesModule 05 · Founders, governance & business assets

IGNITE EXTENDED / LESSON 28

Privacy, security & data responsibilities

How can a company understand what it collects and what responsibility follows?

A data-life-cycle map and a privacy/security review brief.

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28 / OpeningPrivacy, security & data responsibilities

The decision and the learning goals

  • Trace a data flow through a product and its vendors
  • Identify unnecessary collection or unclear control
  • Prepare questions about rights, security and incident responsibilities
90-minute workshopOpening 5 minConcepts and original examples 35 minPractice 25 minDebrief 15 minReview 10 min
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28 / TheoryPrivacy, security & data responsibilities

A data map connects purpose, information and responsibility

A useful data map records what information the product collects, whose information it concerns, why it is needed and where it goes. Include vendors, copies, access and retention. This reveals obligations that an architecture diagram focused only on servers can miss.

Begin with the purpose rather than a list of everything technically collectable. Each data element should have an explainable connection to a product or operational need. New uses and new recipients require a fresh review of that connection and the applicable responsibilities.

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28 / TheoryPrivacy, security & data responsibilities

Privacy and security solve related but different problems

Security concerns protection against events such as unauthorized access, loss or misuse. Privacy concerns appropriate collection and use in relation to people and applicable obligations. A technically secure database can still contain information collected without a justified purpose.

Consider both in product design. Restrict access, protect copies and prepare incident processes, while also examining minimization, transparency and retention. The historical privacy slides are a starting point for questions. Current requirements depend on jurisdiction, context and the people whose data is involved.

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28 / TheoryPrivacy, security & data responsibilities

A data responsibility begins with a purpose

  • State why the information is needed.
  • Identify which people the information concerns.
  • Trace collection, use, storage, sharing and deletion.
  • Separate a useful feature from an unlimited reason to collect data.
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28 / TheoryPrivacy, security & data responsibilities

The data life cycle

The data life cycleCollectUseStoreShareRetain /delete

Map purposes, access and responsibilities at each stage, including vendors and copies.

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28 / TheoryPrivacy, security & data responsibilities

Privacy and security

Privacy examines purposes, expectations and permitted handling of personal data. Security examines protection against unauthorized access, loss or alteration. A system needs both.

Privacy questions

Which personal information should be processed, for what purpose, under what conditions and with what control?

Security questions

How is information protected against inappropriate access, alteration, loss or other threats?

Worked application

Illustrative application: encrypting a customer database protects it in some respects but does not explain why an unnecessary field is collected or shared. Conversely, a carefully limited collection purpose does not prevent a poorly controlled administrator account from exposing the records.

Map the purpose and data flow, then examine access, retention, vendors and operational responsibilities throughout that flow.

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28 / TheoryPrivacy, security & data responsibilities

Data minimization is a design decision

  • Identify the information necessary for the specified purpose.
  • Consider less precise data, shorter retention or a local calculation.
  • Remove collection that has no clear justified use.
  • Revisit the decision when a purpose or product changes.
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28 / Source pagePrivacy, security & data responsibilities

Data protection and privacy: personal data, security, and clarity and control

Data protection and privacy: personal data, security, and clarity and control; Richardson - Intellectual Property and Data Privacy Slides PDF page 9
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28 / Source pagePrivacy, security & data responsibilities

Why privacy matters: regulators, customers and trust

Why privacy matters: regulators, customers and trust; Richardson - Intellectual Property and Data Privacy Slides PDF page 11
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28 / TheoryPrivacy, security & data responsibilities

Minimization changes the product design

Minimization can concern the amount, precision, duration and location of the data. A feature may work with a broad age range instead of a birth date, a local calculation instead of central storage or short-lived data instead of indefinite retention.

Evaluate the effect on usefulness alongside the reduction in exposure. The goal is a specific design decision supported by the purpose. Document why the retained information remains necessary and how deletion works across logs, backups and vendors.

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28 / TheoryPrivacy, security & data responsibilities

A vendor relationship extends the operating system

Sending data to a vendor creates dependencies on that vendor’s practices and on the agreement governing the service. The team needs to understand access, onward use, location, deletion and incident handling.

Assign responsibility for actions the product promises to people. A notice is ineffective if no process can locate or delete relevant records. Test the workflow across systems and make sure product changes trigger a review. The source’s “privacy by design” discussion places these questions during development rather than after launch.

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28 / TheoryPrivacy, security & data responsibilities

A practical data map

ItemRecord
InformationWhat is collected or derived?
PurposeWhy is it used?
Location and recipientsWhere does it go, including vendors?
Access and retentionWho can use it, and for how long?
User and incident processesHow are requests and problems handled?
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28 / TheoryPrivacy, security & data responsibilities

A vendor is part of the system

  • What will the vendor do with the information?
  • Where are data and copies kept?
  • How do access, deletion and export work?
  • Who is responsible for handling an incident or a request?
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28 / TheoryPrivacy, security & data responsibilities

A notice and a working process

A public statement describes how the organization says it handles data. A working process determines whether the organization can consistently deliver that behavior.

Notice

Explains relevant information to people.

Working process

Implements the promised collection, controls, security, retention and response. A notice does not perform those actions by itself.

Worked application

Illustrative application: a notice promises removal after an account closes, but exports remain on shared drives and the vendor retains a copy. The design task is to identify those copies, responsibilities, rules and exceptions and verify the process across them.

Check the implementation behind the promise. Wording alone does not make a deletion, access or incident workflow function.

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28 / TheoryPrivacy, security & data responsibilities

Design for the whole life cycle

A data promise must hold throughout the system, including vendors and copies. Follow an illustrative customer-support record from collection to deletion.

01

Collect

Identify the purpose and the minimum fields required. If a support issue can be resolved with an order reference, explain why a full identity document would be needed before collecting one.

02

Use & access

Map which people and systems need which data for that purpose. Restrict access accordingly and record what happens when a person changes roles or leaves.

03

Share & retain

Trace vendor transfers, exports, logs and backups. Define responsibilities and the period for which each copy is needed. A record deleted in one screen can remain elsewhere.

04

Correct & remove

Design the operational process for relevant requests and deletion rules. Check how exceptions and recovery copies are handled, and verify that actual system behavior matches the promise.

Privacy concerns purpose and permitted handling; security concerns protection. Both require a working process across this life cycle.

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28 / Deep divePrivacy, security & data responsibilities

Relay's PHI data map

Each element earns its place by purpose, or it is cut.

The map follows the data life cycle for Relay Scheduler. The right-hand column is where most findings sit: retention and vendor coverage, not the main database.

Retention periods are an illustrative policy. HIPAA status, BAA scope and retention rules depend on current law, the clinics' agreements and review by qualified counsel.

Data elementPurposeMinimum neededRecipients and vendorsRetention and BAA status
Patient nameMatch the waitlist entry to the clinic recordStored; never placed in SMS or LLM promptsRelay app, cloud hostLife of the clinic contract; cloud host BAA
Mobile numberSend slot offers; receive repliesRequiredSMS provider, cloud hostDelete 30 days after the patient leaves the waitlist (illustrative); SMS provider BAA
Open slot time and clinicContent of the offerTime and 'your clinic' only; no therapist or visit reasonSMS provider, patient's phoneMessage logs 12 months (illustrative)
Patient reply textInterpret acceptance or rescheduleReply text only, stripped of identifiersLLM APIVendor retention at the minimum available; LLM BAA for this configuration; no training
Acceptance historyPrediction model featuresAggregated features, not raw messagesRelay data store24 months, then de-identified (illustrative); use limited by clinic BAAs
EHR appointment dataDetect cancellations; book confirmed slotsAppointment slots and waitlist flags; no clinical notesClinicOS API, cloud hostSync only what booking requires; ClinicOS terms plus clinic BAA
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28 / Source pagePrivacy, security & data responsibilities

Watch out for it: security incidents and cloud vendors

Watch out for it: security incidents and cloud vendors; Richardson - Intellectual Property and Data Privacy Slides PDF page 19
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28 / Source pagePrivacy, security & data responsibilities

Privacy please: legal bases, data-subject rights and design for deletion

Privacy please: legal bases, data-subject rights and design for deletion; Richardson - Intellectual Property and Data Privacy Slides PDF page 24
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28 / Source pagePrivacy, security & data responsibilities

Privacy by design: minimization, access control and documentation

Privacy by design: minimization, access control and documentation; Richardson - Intellectual Property and Data Privacy Slides PDF page 29
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28 / ApplicationPrivacy, security & data responsibilities

A useful feature with unnecessary data

A fictional appointment service needs a contact channel and an available time. Its first design also collects exact location continuously and retains detailed usage logs forever, without a stated need. A vendor can reuse the logs under unclear terms.

What should change before the service relies on this design?

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28 / Current practicePrivacy, security & data responsibilities

Current practice: health data, AI vendors and new state rules

HIPAA Security Rule overhaul pending

HHS proposed major Security Rule changes on January 6, 2025: mandatory encryption and MFA, asset inventories and network maps, regular penetration tests and vulnerability scans, and written verification of business associates' safeguards at least every 12 months. Final action is now projected for July 2027, but clinics and investors already ask for these controls.

Risk analysis drives enforcement

With risk analysis at the center of its 2025 enforcement, including its Risk Analysis Initiative, OCR announced ten resolution agreements in the first five months of 2025, each citing failure to conduct an enterprise-wide risk analysis, with penalties from $25,000 to $3 million and corrective action plans often lasting several years. A documented, enterprise-wide risk analysis that includes AI vendors is the first artifact to produce.

AI vendors sign BAAs for specific configurations

OpenAI states API data is not used for training by default and that it can sign a BAA; Anthropic offers a BAA for the Claude API with a HIPAA configuration enabled. Coverage is feature-specific, so the BAA must match what Relay actually calls.

Texas adds AI and EHR rules

Texas SB 1188 (effective September 1, 2025) requires practitioners who use AI for diagnosis or treatment based on medical records to disclose it, and requires covered entities to keep electronic health records physically in the United States from January 1, 2026. TRAIGA (HB 149), effective January 1, 2026, requires health care providers to disclose AI use in a patient's care. Relay Scheduler handles scheduling rather than diagnosis, but clinics will ask where data is stored and whether patients must be told they are texting an AI.

Texting consent and the EU AI Act

Since April 11, 2025, FCC rules let consumers revoke text consent by any reasonable means, including replying STOP, honored within 10 business days; the broader 'revoke all' provision is waived until January 31, 2027. If Relay ever serves EU patients, the AI Act's duty to tell people they are interacting with an AI applies from August 2, 2026. Texas's general privacy law exempts HIPAA business associates and PHI. Application to Relay depends on current law and the facts and needs legal review.

Sources: McDermott Will & Schulte: Final action on HIPAA Security Rule modifications now projected for July 2027 · National Law Review: 2025 enforcement trends, risk analysis failures at the center of HHS settlements · HHS: Breach Notification Rule · HHS: Guidance on HIPAA and cloud computing · OpenAI: Enterprise privacy · Anthropic Privacy Center: I need to be HIPAA compliant. Can I use Claude? · Goodwin: New Texas law regulates use of EHRs and AI tools (SB 1188) · Arnall Golden Gregory: Texas requires providers to disclose AI use in health care services · Kelley Drye: FCC issues one-year limited waiver of new TCPA consent revocation rule · InfoLawGroup: FCC further extends effective date of the TCPA's consent revocation rule · Lewis Silkin: The Digital Omnibus on AI enters into force · Hunton: Texas enacts Texas Data Privacy and Security Act

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28 / PracticePrivacy, security & data responsibilities

Redesign a small data flow

Use the appointment-service packet. The stated purpose is to offer available appointments and send reminders; no routing feature exists.

Your task

Map the minimum data for the purpose, identify the vendor question and define retention, access and deletion questions for review.

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28 / DebriefPrivacy, security & data responsibilities

Worked answer and reasoning

  • Separate appointment contact and timing information from unexplained continuous location collection.
  • Ask whether the vendor can reuse data and how access, export, deletion and incidents are handled.
  • Define a practical retention and control process instead of relying on a generic privacy notice.
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28 / Venture stepPrivacy, security & data responsibilities

Venture step: Relay's PHI data map and HIPAA review brief

Relay · venture step 28

Month 20, after the pivot. Relay Scheduler sends patient replies to a third-party LLM API to interpret 'can't do 3, anything after 5?' and propose slots. Relay stores names, mobile numbers, appointment times, therapist names and acceptance history for about 120 clinic locations (illustrative). Clinic owners want texts to say the therapist and the reason for the visit to raise acceptance. An earlier near-miss (month 11, Lesson 35): a test message containing a patient's full name went to the wrong number. Northpoint PT's security team has sent a 200-question review (illustrative).

Your task

Produce a data map covering collect, use, store, share and retain/delete for each PHI element, with the minimum needed, recipients and vendors, retention period and BAA status. Add a one-page brief: Relay's HIPAA role, three design changes, vendor requirements and the incident plan.

Relay · illustrative venture25 / 28
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28 / Venture stepPrivacy, security & data responsibilities

Venture step: worked reasoning

  • Role: Relay creates, receives, maintains and transmits PHI on behalf of clinics, so it is a business associate. It needs a BAA with each clinic and must have BAAs with its own subcontractors that handle PHI (cloud host, SMS provider, LLM API), and it may use PHI only as its BAAs permit.
  • Minimize the SMS: send 'A 3:30pm slot opened at your clinic tomorrow. Reply YES to book,' with no full name, therapist, diagnosis or visit reason. Decline the clinic's request to add the visit reason: it raises the harm of every misdirected text, and texts sit on lock screens.
  • LLM path: send only the reply text and candidate slots, with no name, phone number or chart data, under a vendor BAA covering the exact API configuration, with no training on Relay's data and the shortest available retention. Log prompts in Relay's own HIPAA environment with the same retention rules as the rest of PHI.
  • Security program: a documented risk analysis (the most-cited failure in OCR enforcement), role-based access, MFA, encryption, test environments seeded with synthetic data (the fix for the near-miss), and reply-STOP handling within the required time. Retention: acceptance history kept 24 months, then de-identified (illustrative policy).
  • Incident plan: detect, contain, assess whether a breach of unsecured PHI occurred, and notify the clinic without unreasonable delay and within the BAA's deadline (no later than 60 days under HIPAA). The clinic notifies patients. A recorded post-incident review feeds the culture work in L35.
Relay · illustrative venture26 / 28
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28 / DebriefPrivacy, security & data responsibilities

Reasoning traps

Assuming 'no medical records' means no PHI

A name, phone number and a slot at a named PT clinic are individually identifiable health information when Relay handles them for that clinic. Relay is in HIPAA from the first pilot text, including the Wizard-of-Oz phase.

The BAA that covers a different product

LLM and cloud vendors sign BAAs for specific services and configurations. Turning on an uncovered feature, a new model endpoint or a debug log can move PHI outside the agreement without anyone noticing.

Test data made of real patients

Relay's near-miss came from a test message built on a real record. Synthetic data in non-production environments and a fixed allowlist of test numbers remove a whole class of incidents.

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28 / ReviewPrivacy, security & data responsibilities

What you can now explain

Relay's PHI data map and a one-page HIPAA review brief covering its role, design changes, vendor terms and incident plan.

  • A data map starts from purpose and traces each element through collect, use, store, share and delete, including vendors, logs and backups.
  • Privacy and security are different tests: a well-encrypted dataset can still hold data the purpose does not justify.
  • For Relay, HIPAA status, BAAs down the vendor chain and PHI-minimal messages are prerequisites for selling to clinics, not later compliance tasks.

Next lesson: Venture capital, angels & investor economics

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Current rules: IRS: business structures · USPTO: IP tools. Legal, tax and privacy examples teach concepts; application depends on current law and the actual facts.