Privacy and Consent
Probably the most important issue in Healthcare information
This is probably the most important area of consideration when implementing Healthcare Informations solutions. Even more so when considering large scale or regional implementations (see page on LHCREs). It is often pushed to one side for many reasons; for example, if the implementation is for an EHR, then privacy/consent in managed with the application - which users see what information is user specific. Or often it's the implementation of a very specific clinically focused system (say a radiology system) where you can 'safely' assume that users are allowed to see patient information as part of their care - right? Well, is it right? Actually I think it's less than adequate.
GDPR has shone a light on how me must consider the privacy of our information. Yes, of course this is more relating to our online or consumer selves - but there are very specific considerations for Healthcare Information.
- In general, people want healthcare workers to see relevant information to be able to provide informed care. Of course there are always exceptions to this - corner cases
- Some information is more sensitive than other information. For example, sexual health or mental health information
- How and where information is used is important.
- Consenting to use information in the provision of one's care is not the same as consenting for its use in research (secondary use)
- An Emergency Care system - please use privacy meta-data that shows my record to everyone involved in my emergency care
- A pharmaceutical company research data-base - please do not use my healthcare information in this context
These issues can cause major stumbling blocks for implementing healthcare information solutions, especially when corner cases (trying to address every single possible permutation and combination of preferences) stops common sense prevailing.
How to Deal with Privacy and Consent
There are a couple of important things to consider that are very helpful with respect to privacy and consent.
Spend time thinking about whether Opt In or Opt out is most appropriate. In nearly every case I know in the UK, the Opt Out model is choses. Ie. you do not, for every patient, have to specifically ask if they want their records kept to help in their health (or social) care. You do have to give them the option to Opt Out, and they should be aware of this, and the consequences. I have seen arguments for Opt Out = no guarantee of care, and I can really see that being ok. If the only way to provide efficient care is to computerise it, then somewhere your records need to be kept. This does not mean they can be shared and seen by everyone - all solutions expect to put in appropriate role based access control to ensure the data is only shared to the right people.
Things look different depending on your point of view. This is the key idea for this page. The IHE standard for interoperability uses document inherited from HL7 to describe basic patient privacy and consent (BPPC). This method can produce quite sophisticated solutions - but each implementation is specific. The privacy/consent information has to be agreed between healthcare organisations participating in the Healthcare Network and adequately encoded in the BPPC document. But here is the key idea. This BPPC document should be considered as a kind of meta-data (data about data). It becomes a kind of meta-data that tells you about the privacy/consent wishes for that patient. Why not have multiple BPPC documents (or some other similar meta-data object) so that the privacy/consent context can be set, using this meta-data, from different points of view?
Just consider two examples;
Of course these are extreme examples - but illustrative.
It is this concept of Privacy Data as Meta-Data (or a filter of views) that I will explore in this page as it develops.
Content displayed below is being developed.