Circle of Care vs Need-to-Know

[Debra Turnbull]

Here in Ontario, the 'circle of care' is a construct to mean the group of clinicians: doctors, nurse practitioners, specialists, nurses, admin assistants, etc. involved in your care. One could argue that this circle of care also includes: dentists, optometrists, physiotherapists, etc. In a nutshell - anyone involved in your care - is automatically part of your circle.

It turns out that this is not true across the country. This article from the Office of the Information and Privacy Commissioner for Nova Scotia shows that the 'circle of care' is not recognized in Nova Scotia privacy law and argues for the use of the 'need to know' principle. In the cited case of Stebner vs CBC (Saskatchewan), the judge argued that a patient can have more than one circle-of-care. Access to the patient record must change over time – on a need-to-know basis. Health PEI has also adopted this.

Why This Matters
Who can collect and safely keep your Personal Health Information (PHI) is defined by privacy laws across the country. As Ontario ponders the concept of data stewardship, the idea of need-to-know and circle-of-care creates some interesting tensions. Add to that a patient's right to withdraw consent to 'disclosure' and 'use' of PHI, it will be interesting to see how Ontario defines this new data strategy.

NOTE:

• clicking on the phrases in blue lettering will automatically download the documents.
• all documents accessed: 2025-02-25.

[Chris Johnston]

@Debra-Turnbull Such an important topic, and points yet again to the need for standardization - not just the technical stuff, but for everything from terminology through to legislation, so that we can all be on the same page.

There are certainly vast differences in terms, interpretations, regulations and expectations across the country. While 'Circle of Care' may prevail in Ontario, in BC they prefer the term Team Based Care (TBC). However, in a focus group I attended last year, the experts couldn't agree amongst themselves exactly what TBC is, what it involves or how it should function. If they can't achieve a consensus, what hope is there of implementing it in a way that improves the patient experience?

Personally, I don't see any tension between the concept of Circle of Care - which implies collaboration for the benefit of the patient - and the concept of need-to-know - which establishes appropriate levels and limits of access. As a patient, I'd prefer that everyone in my Circle/Team (if I ever actually have one!) operates on a need-to-know basis, and that as a patient I should have input into who needs to know what and when. This sounds difficult to achieve, but in practice it's really not. In hospitals that I've worked in, almost every type of staff has some level of access to a patient record, but the type and volume of info they see is strictly controlled by system level permissions applied by staffing type and connection to the patient.

If & when we get all healthcare systems 'connected' then similar permission levels can and should be implemented throughout primary/secondary care Circle/Team structures, regardless of the individual's role or the organization they belong to.

The Stebner case is a perfect example of why this is necessary, and also why permissions and restrictions need to be embedded in the system architecture rather than left to any individual clinician's discretion. To err is human, but limiting capacity to err, is design.

[Debra Turnbull]

@Chris-Johnston I guess the tension comes from the fact that capturing a patient's explicit consent is not built into any system. As we think about data stewardship, patient consent directives become essential in order to satisfy either circle-of-care and/or need-to-know. Honestly, need-to-know is something new to me - I was unaware of the concept.

Ontario had proposed a 'consent repository' 8 years ago. I have yet to see an example of that... and am wondering if such a thing exists - from any province or country.

[Chris Johnston]

@Debra-Turnbull I totally get it, and when I say I see no tension between circle of care and need-to-know - I also believe that a robust patient consent process is foundational to both. Sadly, I think those foundations are pretty flimsy in practice.

I’ve also never seen any example of a consent repository, but in an ideal future where health systems are seamlessly connected in a way that supports rather than hinders quality care, a dedicated repository would probably be unnecessary. (Pause for wishful sigh while contemplating how far we are from that future)

Since consent is (or I think should be) a fluid thing - with the right to change or withdraw moment to moment depending on all the various factors that affect it (e.g. the patient’s perspective, preferences, circumstances, as well as their perceptions of the provider and the options presented etc.) then in an ideal world it would be rigorously captured / updated / documented in almost every conversation or encounter. Consent would be so interwoven in the record that a separate repository would be inefficient, but meta tagging would still allow independent and dedicated reporting of consent practice at every level from individual patient to nationwide.

And when I say captured, I don’t mean in the way that it’s currently captured as a haphazard tick box exercise to satisfy negligence/liability insurers - but as a core component of care excellence.

Sadly, I think we’re a long way off from that as well. Sigh!