As society today becomes more digitally connected, we often forget the foundations of modern society involve people to see each other as unique individuals. For individuals to actively engage with their surroundings, they need to feel comfortable, establish trust, and are presented with choices that define their relationship and strength of association with whoever they wish to engage.
How people establish trust and their receptiveness to engage through an identity in a digital ecosystem has an ethnocultural perspective that needs to be respected and understood. This is especially important in Te Tiriti obligations.
Digital advancements
The advancements in digital technology and platform systems have given new life to creating an interoperable health record where a consumer can have more visibility and participation in their medical records, with the hope that knowledge empowerment results in aiding better decisions towards self-management of their health journeys.
However, the enablers of this goal are predicated on our understanding of how a person can form a digital identity, that can permit ease of access to relevant care parties who can provide effective treatments. In most cases, cohorts of populations are enabled because they are âeasy winsâ, such as those with high literacy and connectivity, but the digitally disadvantaged are often left in the âtoo hardâ basket which continually drives health inequities. Pareto principle of 80/20 is often quoted to give the most âcost-effectiveâ engagement for digital enablement but, with healthcare, 99.8% should be the aspirational goal.
In my national experiences from prior work and research, including recently with support of Precision Driven Health, I have had the opportunity to quantitatively and qualitatively engage numerous whÄnau across Aotearoa New Zealand.
This is to address one question: how to enable as many enrolled patients on healthcare registers, access to their electronic health records as they want it; not how existing software engineers, clinicians, privacy and patient advocates or governance might want it. After three years of extensive interviews, consultation and population health data analysis, what did I learn?
What constitutes a person or individual?
How we define an individual often is based on their anchor name, with the assumption that their (up to 53) senses are working well. A normal persona often used in policy assumptions for creating digital identity is that a person is happy to stay in the same location, static ethnicity, gender and other unique personalised contact details like email and mobile and are the typical âmedianâ income contributor to society.
However, instead of finding people who could be related to the normal persona:
- every aspect of a name and gender may change over time from what was documented at birth
- ethnicity association, especially with genealogy/genetic services changes as more discoveries come to light
- transient nature of contact details due to employment, lifestyle or cybersecurity reasons
- life circumstances such as partnership separation, cultural changes and children adopting motherâs maiden name
So, when digital identity is bound to an individual based on their legal document, it may be incorrectly bound soon after one or more life events.
From my research I found that about a third of all health consumers would prefer to operate one shared contact detail (e.g. email or mobile), primarily due to shared care responsibilities of the âhead of the householdâ, and people often say âI have shared my mailbox with my family for 50 years, so why do I have to change now?â
Delegation and Access
Biological immediate family relationships are often assumed to be one of the most trusted, but in some parts of society, this may also be the most fragile. An individualâs trusted social support network helps define who they approach and how they seek advice.
Defining the relationship and level of association between stated individuals helps system designers apply rules for role-based access controls. Health Act 1956 section 22F states as long as the individual consents, disclosure to a delegated party is permissible. How should digital access permissions be governed in a pragmatic sense while respecting family and social support network dynamics?
People want to access relevant information that helps them or others on their behalf drive decisions, including the level of information required for reassurance or guiding a journey. This means if any individual wishes to delegate their responsibilities need to be provided with the relevant information according to the situation.
However, current designs for healthcare data access are centralised around defining the purpose and justifying proximity for point of care events. If it isnât stated in the purpose, then information is considered inappropriate for disclosure.
The limits on data access by delegated parties, whether it is whÄnau providing support, or clinicians who are part of the wider care team, is that undisclosed data is not considered as part of existing treatment, and harm is more likely to occur when there are conflicting treatment protocols.
If too much data is disclosed without relevance will also achieve the same result, where potentially important information is ignored from cognitive overload. Over disclosure without understanding the implications has also resulted in harm, such as health insurance declining policies or claims when patients need it most.
Hira
Hira offers a great next step opportunity to tackle some of these concerns. The fundamental approach should be trust but verify in a mana whenua co-designed process, enabling benefits, limitations, and potential harms to be understood by all engaged parties.
An important factor is also the redress of potential or actual âharmâ to be managed early in a genuine and empathic manner, similar to ACCâs no-fault approach. Until all parties, including patients, whÄnau, clinicians and the health system, are comfortable and any grievances have an avenue to be redressed, then Aotearoa New Zealand canât realise the potential for a digital health system.
from https://www.hinz.org.nz/news/610316/My-View-Digital-Identity-Delegations-and-Access.htm