Heath Data Union - General Interest

What we are Building, What do we want to see in the World?

Help us build a Heath Data Union that provides privacy-first, human-centric products and services around our health and wellness data. A user-owned or directed platform for Health Data that only has the data owners best interests as their motivation. This is a reaction against corporate and or government control of citizen health data, information and insights.

We are on a mission to empower global citizens with tools to manage, share, and gain insights from their health and wellness data over time, Tools that are transparent, privacy-first, user-controlled. Such as a Personal Health Record (pHR or eHR) or an alternative to Apple / Android Health trackers.

What is this purpose and privacy of this form?

This short survey helps us understand what matters most to you so we can design and build in alignment with our supporters' needs and desired outcomes.

Only the first and last questions are required. The rest are optional.

This form is made with Tally.so tools which are based in the EU and GDPR compliant (privacy-first)

Definitions (General)

Please note "Health Data" can mean anything from clinical doctors notes and lab results to daily wellness or fitness routines. As well as our mental and emotional health information.

A "Union" means a group of Humans sharing a set of values and obtaining benefits in a membership society with fees or dues as well as material benefits to members.

A "Cooperative" means an organisation that is member-owned, and members can benefit from any profits obtained by the cooperative (think of Mutual Aid Societies or Credit Unions). Generally it is a "one member, one vote" form of Governance.

A "Not For Profit" is a type of organisation that is motivated by mission. Can have profits but they are re-invested into the organisation. Generally Board level Governance.

A "Social Enterprise" is a type of business that is mission-driven, but can have a self-sustaining profit or revenue streams. Various Governance methods are possible

1) (Select 1 choice) How concerned are you about who controls your Health Data?

2) (Select 1 choice) Which statement resonates most with you? Or add your own

3) (Ranking) If a health data union existed, which features (products, services, benefits) would matter most to you?

Use the up and down arrow keys to change the rank.

Condition specific patient support groups and community

Ability to receive compensation for sharing anonymized data for medical or commercial outcomes

Secure storage of all my health records in one place

4) (Ranking) What health data do you currently track or would want to track?

Use the up and down arrow keys to change the rank.

Doctor visits and medical records (present to future)

Mental health and mood tracking

Doctor visits and medical records (collecting paper records from my PAST history)

Lab results (blood tests, etc.)

Medications, prescriptions and insight on interactions

Sport Specific Health Tracker (Cycling, Weight Training, Pilates, Soccer)

Nutrition, diet and macronutrient tracking

Other (please use notes)

Medical imaging (X-rays, MRIs, scans)

Family health history

Wellness tracker data (menstrual cycles, menopause, HRT, yoga, recovery, therapy)

Fitness tracker data (steps, heart rate, sleep, workouts)

Genomic Testing and DNA results (23andMe etc)

5) (Select all that apply) How would you like to be involved?

I am not interested in being involved

Still unsure of the impact, need to learn more

Join as a founding member to help build the movement and outcomes

Contribute ideas for governance and features

Participate in user testing and feedback as products develop

Participate in user interviews and provide my needs immediately

Provide technical/legal/design expertise (part-time unpaid or volunteer)

Provide technical/legal/design expertise (full-time or as paid staff)

Follow along with updates on LinkedIn or Substack (I may join later)

6) (Select 1 choice) Would you be willing to pay for membership and services? This could be a monthly, annual or lifetime.

7) (Select 1 choice) Which Type of Entity would convey the Trust and Movement based mission of this Heath Data Union?

8) Your Email address for follow up

9) (Short Text) Your Country of Residence (required)