The document discusses the Mydex data services initiative, focusing on a person-centric approach to data sharing for cancer support, which involves 20,000 patients and 220 organizations in Glasgow. It outlines the process of securely storing personal data and allowing citizens to share relevant data with service providers while maintaining control over it. Ultimately, it emphasizes the benefits of simplifying data sharing systems and empowering citizens, contrasting this with the complexities and risks of traditional organization-to-organization data sharing.

1. Mydex Data Services Community Interest Company, all rights reserved
Radical Data Institutions
in a complex world
1
Alan Mitchell, Chairman, Mydex CIC
Open Data Institute, March 2022

2. Cancer Journey Glasgow - Cancer Support
- 20,000 patients
- 60,000 friends,
family & carers
- 220 organisations
- 6,000 staff
- 700 data attributes
- 500,000 events per
annum where data
sharing is needed

3. 3
Macmillan MyData web apps
Different users
PDS feed appropriate data to
different users’ apps
PDS gets data from different
service providers

4. Data sharing via a personal data store - Step 1
Organisations deposit
data about the citizen
in their individually
encrypted personal
data store
Individuals can add data only they know:
goals, plans, priorities, preferences, contexts
Data held securely so that citizen can re-use it
whenever they need

5. Data sharing via a personal data store - Step 2
Citizens share relevant
bundles of this data
with service providers
as and when needed,
under their control
Data
Trust
Data
Trust
Citizens bring
their data to new
relationships

6. Mydex Data Services Community Interest Company, all rights reserved
Growing number of proof points
6
Brixham Data Trust

7. Mydex Data Services Community Interest Company, all rights reserved
Organisation-to-organisation
8 organisations, 28 connections
7
Data sharing: numbers of connections needed
Via personal data store
8 organisations, 8 connections

8. Mydex Data Services Community Interest Company, all rights reserved
Org-to-org
X = n(n-2)
2
8
Data sharing: numbers of connections needed
Via personal
data store
X = n
Number of
organisations
2
3
10
100
1
3
45
4950
2
3
10
100
PDS-based
architecture 50 times
less complex

9. Mydex Data Services Community Interest Company, all rights reserved
9
Org2org versus person-centric data sharing
Org2Org flaws and risks
● Complexity catastrophe
● Consent nightmare
● Citizen exclusion perpetuated
● Innovation restricted
Person-centric benefits
● Radical simplification, system
-wide reductions in friction,
effort risk and cost
● Citizens empowered
● Imbalances of power rectified
● New-to-the-world personal
data assets generated, new
dimensions of innovation

10. Mydex Data Services Community Interest Company, all rights reserved
10
Key messages
Contact
alan@mydex.org
Blogs
- Medium.com/mydex
- Medium.com/incluedplatform
1. System design matters. A lot!
2. An alternative person-centric approach is
already live, operational and delivering
benefits for citizens and service providers