Data & Ethics

Why Data in LONA Follows a Different Logic

LONA does not treat data as an extractive asset. LONA treats visibility as a relational, ethical, and structural question. Most digital systems collect more than individuals can meaningfully understand, control, or revisit, turning lived experience into abstracted data elsewhere.

LONA is built differently. Experience belongs first to the individual living it, and what becomes visible must remain connected to consent, context, and meaningful return. Trust weakens when data leaves the individual and never comes back in a form that supports their own development.

The privacy structure described on this page is what allows LONA to be adoptable across jurisdictions, health systems, and insurer ecosystems without requiring any of them to abandon their own standards. Adoption-readiness is built in from the foundation, not added later.

Data & Ethics

How Visibility Is Structured

For LONA to work, the ecosystem must clearly distinguish how experience is lived, what is shared, and what becomes visible over time. These are related dimensions, but they are never collapsed into one another.

This separation is what protects trust. It ensures that lived experience can remain private, that sharing remains intentional, and that clinically or institutionally relevant visibility only emerges through structure and consent.

01Private Experience

Private reflection, self-observation, creative expression, and personal development take place here. This part of the ecosystem belongs entirely to the individual. It is not clinical, not public, and not automatically visible to anyone else.

02Shared By Choice

This is the threshold of intentional disclosure. The individual decides what becomes visible, to whom, at what level of detail, and for what purpose. Disclosure is explicit, granular, and revocable at any time.

03Structured Insight

What is shared is not passed on as raw personal content. It is translated into structured developmental context: what has shifted, what has remained stable, and which domains may be relevant over time. LONA does not diagnose. It provides continuity of understanding.

Private Space

The inner experience space remains private by default. Reflections, writing, images, internal states, and personal development are not automatically visible to practitioners, doctors, institutions, or research partners. Nothing becomes exposed simply because it exists in the ecosystem.

This protected space is not a privacy preference. It is a developmental condition. Experience needs a place where it can take form before it is interpreted, translated, or shared with others.

Family Admin And Delegated Responsibility

Households Participate As Connected Contexts

LONA supports household-based participation through a Family Admin role. The Family Admin enrols as primary member and carries account-level responsibility for their own children and parents included in the household.

Children are fully managed through the Family Admin. Every included adult provides their own explicit consent in addition to Admin responsibility, and retains the right to adjust visibility, withdraw consent, or move to an independent account at any time.

Within this structure, the principles already described continue to apply. The inner experience of each family member remains private by default. Sharing is selected, granular, and revocable. Clinical translation, research participation, and institutional visibility require their own additional consent at the level of the individual concerned.

Admin can see

Household activity view: who is active, what is booked, whether a session was attended

Admin can do

Book sessions for children, arrange formats across the household, manage children's accounts fully

Admin cannot see

Private reflection content of any adult member — this remains with each adult, always

Adult members

Each adult consents independently and can adjust, pause, or withdraw their visibility at any time

Controlled Sharing

Sharing Is A Choice

When an individual chooses to share, what becomes visible is never everything. It is selected, structured, and made visible for a defined purpose.

The individual determines what is shared, with whom, at what level of detail, and in which context. Sharing is explicit, granular, and revocable at any time.

01Selected Experiences And Patterns

The individual determines which experiences, developmental patterns, or reflections are made visible. Selection is always intentional and purpose-bound.

02Stability Over Time

The ecosystem can surface what has remained consistent across a longer period, providing continuity of understanding rather than isolated snapshots.

03Shifts And Changes

The ecosystem can indicate what has changed, intensified, softened, or become more difficult over time, making developmental movement traceable without interpretation.

04Clinically Relevant Domains

The ecosystem can highlight which domains may be relevant, such as sleep, mood, social engagement, regulation, or somatic awareness, without making diagnostic claims.

Clinical Translation

How Experience Becomes Structured Insight

When an individual consents to share within a clinical context, no raw personal content is transferred. Selected experience is translated into structured developmental signals: what has changed, what has remained stable, and which domains may require attention. The purpose is continuity of clinical understanding over time, not a single assessment or categorical reduction.

LONA does not diagnose and does not prescribe. Medical professionals remain the decision-makers. LONA extends their visibility between consultations through consent-based structured context, connecting what individuals experience over time with what clinical care can meaningfully respond to.

Research Is Separate

Research Requires Additional Consent

Research participation is structurally separate from private reflection and separate from clinical translation. If an individual chooses to contribute to research, that contribution requires additional consent and enters a distinct learning process within the ecosystem.

If a contribution is accepted and used, it can be recognized as value and translated into credits within LONA. This is not a transaction. It is a form of recognition for meaningful contribution to collective understanding.

What Returns

Value Returns To The Individual

What is made visible in LONA does not disappear into the ecosystem. LONA returns it as continuity, orientation, improved pathways, and clearer developmental understanding over time.

LONA's purpose is not collection. LONA's purpose is meaningful return: stronger self-understanding, more relevant access, and recognition that lived experience has been received and carried forward.

The Ethical Position

Trust Is Built Through Structure

Trust is not created through reassurance alone. It must be built into how an ecosystem is structured, how roles are separated, and how visibility is governed.

LONA is built on clear distinctions between private experience, disclosure, clinical translation, and research. Medical decisions remain with medical professionals, while individuals remain in control of what they choose to share. Ethics here is not a feature. It is the architecture of the ecosystem itself.

The Trust Loop

LONA Improves Through Trust, Not Extraction

LONA is designed to improve through trust-based consent, not through surveillance, data extraction, or data capture for its own sake.

The better participants are supported, the more trust can emerge. The more trust emerges, the more consent-based visibility becomes possible. That visibility, in turn, helps LONA improve support, pathways, and infrastructure over time.

This is not a growth mechanic. It is an ethical position built into how the ecosystem learns. LONA does not extract insight from activity. It earns visibility through the quality of what it provides.

Regulatory Readiness

How LONA Sits Within Health And Data Regulation

LONA is non-diagnostic by design. The architecture is built so that diagnostic use is structurally impossible, not merely discouraged. Within that position, the platform is configured to meet the data protection, medical device, and research governance requirements of the jurisdictions in which it operates.

DEGermany: Ready

DSGVO and Bundesdatenschutzgesetz compliant. Outside the scope of the Medizinprodukteverordnung as a non-diagnostic developmental infrastructure, in line with the general wellbeing position under EU Medical Device Regulation 2017/745. Designed as a structural complement to prevention frameworks under §20 SGB V, without claiming Präventionskurs certification. The Berlin pilot is being evaluated under this position.

UKUnited Kingdom: Ready

UK GDPR and Data Protection Act 2018 compliant. Aligned with the MHRA general wellbeing position for software and AI as a medical device. Configured against the NHS Digital Technology Assessment Criteria for digital health technologies. The Health Research Authority approval pathway is available for any UK research collaboration, and the NICE Evidence Standards Framework tier logic has been mapped against the platform. The UK pilot is prepared under this position.

USUnited States: Prepared

Architecture aligned with the FDA general wellness position under §520(o) of the Federal Food, Drug, and Cosmetic Act, as established by the 21st Century Cures Act. HIPAA-aware data architecture, capable of operating under a Business Associate Agreement when entering covered-entity contexts. Consent logic and consumer-health-data structure prepared for the Washington My Health My Data Act. The final United States configuration will be defined together with the first United States partners, depending on where pilot, research, and clinical collaborations originate.

Roadmap Note

Continuity Of Consent When Capacity Shifts

LONA participation is designed to be carried over long developmental arcs. Across such arcs, situations may arise in which an included adult temporarily or permanently loses the capacity to give consent independently. LONA is preparing a continuity-of-consent mode that allows a previously designated representative to maintain household participation on behalf of an included adult, in line with the legally recognised representation instruments of each jurisdiction.

The mode will follow the Lasting Power of Attorney for Health and Welfare under the United Kingdom Mental Capacity Act 2005, the Healthcare Power of Attorney and Advance Directive frameworks in use across United States states, and the Vorsorgevollmacht together with the Zentrales Vorsorgeregister and § 1358 BGB representation rules in Germany. The intent is structural readiness, not a launch commitment, so that household participation remains continuous when an included adult cannot temporarily speak for themselves.

Role Governance

Who Holds Space Is Part Of The Architecture

Role onboarding, qualification, and responsible guidance are part of LONA's trust architecture, not secondary operational details.

Individuals can only offer formats inside LONA if they meet defined role requirements. Existing external qualifications are recognised, but are not sufficient on their own. Everyone must go through LONA onboarding, verification, and role-specific approval. LONA determines what kind of format each role may offer, under what conditions, and at what level of visibility and responsibility.

Trust is built through governance, qualification, onboarding, and role clarity. Without it, consent becomes meaningless, and without consent, the ecosystem cannot learn.