Friday, August 30, 2019

The Patient Innovator Track at DevDays - Privacy

I assume anyone reading my blog has already seen this announcement on FireLy, Grahame, HL7, Hay on FHIR, etc. Go read those for the specific details, no good reason for me to duplicate them.

What I will do is focus on the opportunity for Patient to drive for Innovations in Privacy. Most of the other blogs are focusing on the Patient being the Innovator at "using" their data. This is the most powerful thing that Patient access using FHIR enables, by giving high quality and fully coded data into the hands of the Patient... so that the Patient can call upon a vast future set of applications that can enhance their Patient health (and safety).

Patient Privacy enhancements can also happen. When I reference Patient Privacy I am not just speaking of "Confidentiality" or "Consent". I am speaking to all of the Privacy Principles.  Here is the list summarized:
The OECD Privacy Principles are as good as any to review
  1. Collection Limitation Principle -- There should be limits to the collection of personal data and any such data should be obtained by lawful and fair means and, where appropriate, with the knowledge or consent of the data subject.
  2. Data Quality Principle -- Personal data should be relevant to the purposes for which they are to be used, and, to the extent necessary for those purposes, should be accurate, complete and kept up-to-date.
  3. Purpose Specification Principle -- The purposes for which personal data are collected should be specified not later than at the time of data collection and the subsequent use limited to the fulfilment of those purposes or such others as are not incompatible with those purposes and as are specified on each occasion of change of purpose.
  4. Use Limitation Principle -- Personal data should not be disclosed, made available or otherwise used for purposes other than those specified in accordance with Paragraph 9 except: a) with the consent of the data subject; or b) by the authority of law.
  5. Security Safeguards Principle -- Personal data should be protected by reasonable security safeguards against such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.
  6. Openness Principle -- There should be a general policy of openness about developments, practices and policies with respect to personal data. Means should be readily available of establishing the existence and nature of personal data, and the main purposes of their use, as well as the identity and usual residence of the data controller.
  7. Individual Participation Principle -- An individual should have the right:a) to obtain from a data controller, or otherwise, confirmation of whether or not the data controller has data relating to him; b) to have communicated to him, data relating to him within a reasonable time; at a charge, if any, that is not excessive; in a reasonable manner; and in a form that is readily intelligible to him; c) to be given reasons if a request made under subparagraphs(a) and (b) is denied, and to be able to challenge such denial; and d) to challenge data relating to him and, if the challenge is successful to have the data erased, rectified, completed or amended.
  8. Accountability Principle -- A data controller should be accountable for complying with measures which give effect to the principles stated above.
It isn't even as simple as these 8 Privacy Principles. There are regional nuances, personal decisions, concerns for safety/health, etc. Often times there is complaints that these Privacy Principles get in the way of Medical Ethics the actual cases of conflict are few and usually well understood by those affected.

I included all the Privacy Principles, although most will think that they-as-a-patient have very little control over these. This might be true, but "Innovation" comes from creative thinking. So I challenge the Patient Innovators with the full set of Privacy Principles

One that I am working on, with the help from my fresh college graduate son (please hire him), is an app that helps keep the Patient informed of how, and when their data are used

Finding Gaps in the specification and implementations:

As with all of the innovations in FHIR, the road is not always smooth. We are uncovering issues in the FHIR specification, issues in common implementations of FHIR Servers, and misunderstandings all around. These gaps are the important thing to uncover at this point in the FHIR Maturity. So please speak up when you uncover a gap. Now is not the time to be held back by a gap, or to 'hack' around the gap. Hit the gap head-on.

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