Data Privacy Lead

Human Health Project (HHP) is a holistic health literacy charity. Our mission is to improve the health of the underserved and vulnerable through holistic information, education and advocacy. Our objective is to empower people to manage their own health with improved outcomes and no medical errors. For more information, please visit our website including viewing our "Shared Patient Information" program page which includes 50 pages of reports on both our Migraine and Lupus and feedback received from people who reviewed the reports in the section, "What Our Members are Saying" - and our "Healthcare Access Program" which includes short video courses in our Learning Academy - , Patient Advocacy Workshops in Los Angeles, - and in Northern Ireland - and our Online Peer to Peer Events -

Volunteer Opportunity | Remote | Human Health Project

DETAILS

Available Times: Weekdays (daytime or evenings)

Time Commitment: A few hours per week

Recurrence: Recurring

Volunteers Needed: 1

Cause Areas: Health & Medicine, Human Rights & Civil Liberties

Location: Remote. Volunteer can be anywhere in the world.

Reports to: Chief Information Security Officer (CISO)

THE OPPORTUNITY

HHP operates as separate legal entities in the United States, Northern Ireland, and the Republic of

Ireland. Its UPE platform collects personal health information from users in multiple countries.

Compliance with GDPR, HIPAA, COPPA, CPRA, and MODPA depends on knowing exactly what data

HHP holds, where it flows, under what legal basis, and how long it is retained.

The Data Privacy Lead builds and maintains that picture. This role is essential to HHP's commercial

licensing strategy: no health system or insurer will sign a licensing agreement without confidence that

the underlying data program is sound.

RESPONSIBILITIES

• Build and maintain HHP's data inventory across all three legal entities, covering what personal

data is collected, where it is stored, how it is used, and how long it is retained

• Map cross-border data flows between the US, Northern Ireland, and Republic of Ireland entities

and identify the appropriate transfer mechanisms required under GDPR

• Maintain records of processing activities (RoPA) as required under GDPR Article 30
• Advise on data minimization, purpose limitation, and retention schedule design
• Support the development and implementation of user consent mechanisms and privacy notices
• Advise on data subject rights processes (access, deletion, correction, portability) under applicable

frameworks

• Participate in the Security and Privacy Council

QUALIFICATIONS

We welcome applications from students, early-career professionals, and practitioners returning to the

workforce. Demonstrated skills and relevant coursework are considered alongside formal experience.

Required:

• Substantive knowledge of GDPR, including cross-border transfer rules, lawful basis for

processing, and records of processing requirements

• Familiarity with at least one US privacy framework (HIPAA, CPRA, or MODPA)
• Experience conducting data mapping or building data inventories in a multi-entity or multi-

jurisdiction organization

• Strong analytical and documentation skills

Preferred:

• Experience with international data transfer mechanisms including standard contractual clauses

and adequacy decisions

• Knowledge of children's data protection requirements under COPPA and GDPR
• Certifications such as CIPP/E, CIPP/US, CIPM, or CIPT
• Experience in healthcare, health technology, or a regulated industry handling sensitive personal

data

ABOUT HUMAN HEALTH PROJECT

Human Health Project (HHP) is a holistic health literacy charity. Our mission is to improve the health of

the underserved and vulnerable through holistic information, education, and advocacy. Our objective is

to empower people to manage their own health with improved outcomes and no medical errors.

Founded in 2002, HHP operates across the United States, Northern Ireland, and the Republic of

Ireland, serving patients and caregivers worldwide through peer-to-peer programs, a multilingual

Learning Academy, and the Unified Patient Experience (UPE) platform. For more information, visit

ADDITIONAL INFORMATION

This is an unpaid volunteer position. Hours are flexible. All volunteers in the CISO organization are

required to sign HHP's standard volunteer agreement before accessing any HHP systems or

confidential information.

HOW TO APPLY

To apply, please copy/paste the address below in a new tab or window to submit the Pre-Screen Questionnaire and Resume: