Product Manager / Product Owner & Data Security Expert (volunteer / pro bono)

Please read before applying:

This is a pro bono / volunteer role — unpaid, no salary or compensation of any kind. We work remote worldwide, but our core hours align with Germany (CET/CEST). German language skills are helpful.

Thank you

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ABOUT KILL PARKINSON

Parkinson's affects us all, sometimes sooner than we expect. Research predicts the number of patients could double within 25 years — meaning some of us, our friends, family, or even our kids, may face it. We fight for a world without Parkinson's.

Our mission: a global, patient-led Parkinson's registry. By combining the experiences and health insights of 12 million people, we help researchers identify patterns that may lead to better therapies — and one day, a cure.

OUR AI ENABLEMENT APPROACH

We use AI every day in both our strategic and operational activities—with a current focus on Claude. As a Product Owner, you’ll work extensively with AI across all areas and help shape how AI is responsibly integrated into our products and services, collaborating closely with our legal team on governance matters.

YOUR ROLE

We are looking for a Senior Product Manager / Product Owner to join our existing team of three and guide the Parkinson’s Registry from its current status through to market launch and beyond—and to share responsibility for the data security and privacy architecture on which everything else is based.

We are open to hiring either an experienced gen

eralist with in-depth knowledge in both areas or a specialist in one area who has genuine, practical knowledge in the other. Specifically, you will be jointly responsible for:

• The registry product itself — login/registration flow (including OTP, passkeys, social login), the static-vs-dynamic data model, MVP versioning (closed beta → silent public launch → official launch), multi-language rollout, and the "Kipa World" gamification layer
• The data architecture questions our own dev and legal team have already opened: our KiPa-ID pseudonymisation scheme (hashed Cognito IDs, separately-vaulted secrets), export-pseudonym design, and where the line sits between what's pseudonymised vs. what would need to be truly anonymised
• Re-identification risk from field combinations — Parkinson's is a smaller, more heterogeneous population than most large biobanks, which makes k-anonymity/l-diversity review of demographic fields (gender, place of birth, diagnosis year, symptom combinations) more urgent for us, not less
• Our researcher data-access model: a researcher access portal, data-sharing/data-transfer agreements, and a clear, enforceable data lifecycle (retention, deletion confirmation after authorised use, notification on withdrawal) — designed in from the start.
• The pipeline of registry-related web services aimed at providing relevant services to our large Parkinson’s community—including a forum, a rating system and directory of Parkinson’s resources, a search tool for healthcare providers, a video portal, and more—to translate these ideas from the planning phase into a prioritized, actionable roadmap.
• Healthcare-data compliance in practice: lawful basis under GDPR Art. 9 for special-category health data, ethics-committee approval, informed consent design, and data classification aligned to standards like ICD/OPS/ATC where relevant

YOUR TASKS INCLUDE

• Maintaining a focused registry backlog across the MVP phases, translating our Monday.com requirements board into clear, sequenced, buildable work with acceptance criteria
• Deciding and documenting our lending-vs-reading-library posture for researcher data access — whether partners ever get raw/participant-level exports, or only aggregated/derived outputs — and building in an "airlock"-style check against disguised re-identifiable exports
• Working Legal on the pseudonymisation architecture: reviewing designs like the export-pseudonym flow (per-export salt, HMAC, salt destruction) for soundness, not just approving them
• Prioritising the website-services backlog (registry-acquisition features) alongside our website team, and turning validated ideas into requirements the dev team can actually ship
• Supporting GDPR documentation — DPIAs, Records of Processing, Data Security Questionnaires and TOMS documents required by research partners — in collaboration with our Legal team
• Facilitating registry and product team syncs, agreeing realistic milestones, and surfacing blockers before they threaten the launch timeline

WHAT WE'RE LOOKING FOR

• Experience managing digital products as a Product Manager, Product Owner or in a comparable role, including taking a product or substantial feature through to release
• Background in information security, data protection, or GDPR compliance, ideally including hands-on experience with pseudonymisation/anonymisation design, re-identification risk assessment, or researcher data-sharing agreements
• Comfort with (or genuine interest in) healthcare-data specifics — Art. 9 GDPR special categories, ethics-committee processes, and the practical difference between "compliant on paper" and "compliant in the architecture"
• Confidence working directly with engineers on real technical trade-offs (you don't need to write the code, but you need to be able to push back on a design and understand why)
• A collaborative approach: you listen, invite different perspectives, and help a small, distributed volunteer team actually make decisions instead of stalling on them
• Strong follow-through — you communicate proactively, keep your commitments and flag changes in your availability early
• The judgment to keep processes lightweight and priorities realistic in a small, resource-constrained volunteer team — you're not building what a 500,000-participant biobank needs, but you know which of their hard-won lessons genuinely apply at our scale
• A long-term, pro bono mindset — on average 8–10 hours/week, flexible, 100% remote

WHAT YOU'LL GET

• A meaningful, long-term role with real ownership over both the product direction and the data-protection architecture of a global health initiative — not an advisory seat, the actual decisions
• Membership in a kind, purpose-driven team working to improve life for 12 million people and their families
• Remote and flexible structure — contribute when and where it suits you
• A volunteer certificate, personalized reference, and lasting connections with experts worldwide
• Deep satisfaction from building something people living with Parkinson's can trust with their most sensitive data

READY TO FIGHT NEURODEGENERATIVE DISEASES?

Send us a short CV — and help us build the product and data-protection foundation of a global community that could change the lives of over 12 million people and their families.