People interested in: Decentralized Health Records

@erick posted this before:

which was interesting. Are there any others here interested in this topic? Anyone actively building anything? Ideas about starting?

Thanks,

Phil.

You may have seen this already but I did reply elsewhere in this forum with snippet:

Welcome to the PEP project page. This project is about privacy friendly exchange of medical data for specific medical research purposes. The PEP methodology combines advanced encryption with distributed pseudonymisation, and distribution of trusted data with fine-grained access management. The first pilot project is a large scale Parkinson research project.

Link:
http://pep.cs.ru.nl/

PEP here stands for “Polymorphic encryption and pseudonymisation for personalised healthcare”.

In the slides or in the paper there’s just one two-way arrow between “Doctor” and the data - apart from “Storage” - all the other participants including “Patient” having been marked one-directional but here is this part of the paper about access for user A [the patient]:

Additionally we foresee that, after authentication, user A gets access to a `dashboard’ that gives an overview of, among other things:

  • what data is stored about A, that is, a listing of the record[s];
  • log files, describing who has accessed which data of A at which time;
  • a configurable set of access rules, where user A can decide which medical staff can get access to which data; these rules may for instance be based on white listing, on black listing, or on a combination;
  • a similar set of rules for other use of the data, together with purpose descriptions. This ‘other’ usage may include, for instance, commercial or non-commercial medical research, or additional services, based on a Data Licensing Agreement (DLA), see Section 1.5. In principle, the whole set-up also allows that users sell their data in pseudonymous form, but still get the revenues individually.

@JBishop,

Interesting stuff but I can’t see any connection to SAFE - has anyone talked to them about building it on SAFE?