November 2009

What is the best way of using outcome information ethically? 

This column is premised on the assumption that there are ethical issues involved in using information. There may be people who do not accept that there are ethical issues involved in using information. This column is not for them. I will not attempt to provide a justification (here) for why I think using information involves a range of ethical issues. Suffice to say, I think everything we do is ethical and hence using information is also necessarily ethical.

Nor will I trot out the usual ‘principles’ that tend to be discussed in this context. Principles such as ‘confidentiality’ and ‘privacy’ for example. Such principles may simply provide a spurious sense of having followed a protocol and of having ticked all the boxes so to speak. Indeed, divorced from a context and particularly from the people involved in a context, the appeal to some ‘objective’ principles may be misleading at best and – at worst – specious.

Where to begin? Let’s begin with the necessary foundations of ethical decision making. The foundations of outcome information, in the sense of referring to individual people, are the individual service users. This is because the outcomes being collected are, presumably, about someone, namely the service user.

Without involving myself in a discussion on ethical theory 101, I would like to suggest three steps involved in information use based on this foundational approach. These steps can apply to any of the four levels that information operates at (namely, national, DHB, team and service user-clinician levels).

(The interesting thing about the information levels is that while national and DHB outcome information is of the aggregated kind, the service user-clinician level is always at an individual level of information use whereas at the team level both individual and aggregated outcome information applies.)

These three steps are: firstly, awareness that this outcome information exists. Secondly, the ability of individuals or services to access outcome information for their own use. Thirdly determining who actually owns that information.

There are particular ethical issues involved in each step and I want to tease them out a little, while focusing on the service user relationship with information.

Awareness of outcome measurement among most clinicians is good. However, most service users are not aware that outcome information is being collected. Why might this be a problem ethically? The information being collected is about someone and so it is reasonable that the person it is about is made aware this information exists. While the aggregated or secondary uses of outcome information is important the primary use of outcome information is to help the individual service user with their recovery.

If we can agree that service users should be aware that outcome information exits, whose responsibility might it be to facilitate this awareness? At some level the service user is responsible for asking questions and showing an interest in their own life. In the first instance, however, given the power imbalance between clinicians and service users I would suggest that as a matter of professional integrity and respect clinicians should have the lead responsibility. Part of good clinical practice is sharing information collaboratively in order to foster a partnership approach. I am appealing to professional virtues in this context rather than principles or guidelines.

Assuming we agree that clinicians, managers and service users should be aware this outcome information is being collected, does awareness necessarily mean some access in part or completely?

Let me say straight away that I don’t see any necessary entailment between awareness and access. It is quite possible that someone could be made aware of this information but that wouldn’t necessarily mean that they should have access to it.

Also let me distinguish two possible understandings of access. Firstly there is the right to see information, which is legalistic access. Secondly, there is the actual ability to access information, let’s call this technical access. It is quite possible for someone to be aware of information, to have the legal right to access it but still not be able to access it for technical reasons. Often information is electronically available and some people may not have the means of gaining such electronic access. As a general rule, if someone does have the right to access information there should be a serious attempt to make that information accessible technically.

Personally it seems to me, unless there are clear and justifiable reasons for not sharing this outcome information the default position should be that all service users have access to their own outcome information. How should that access be facilitated? Preferably access should be facilitated through the clinician sharing the information with service users. However, there is no convincing reason why service users shouldn’t be able to directly access their own outcome information from the service provider for themselves.

Ownership is less troubling, at least superficially. However, if we distinguish moral and legal ownership the matter becomes less clear. While the service provider may have legal ownership of the information, many service users would be seen as having moral ownership. Over time the moral ownership case becomes stronger, which could put pressure on the legal ownership issue.

Some of the issues discussed here with regard service users can be seen to apply to clinicians and managers as well. For example, one of the most pressing issues is determining whether clinicians and managers should be able to access aggregated outcome information from another DHB. 

However, this is to jump the gun so to speak. First, we need to raise awareness that outcome information exists amongst clinicians and managers and what its potential uses might be. Having achieved this awareness raising we can then discuss access.

As publically funded mental health services (private services will have different dynamics in this regard) it seems logically necessary that all aggregated information should be made available to the public by open access. In some sense the public ‘owns’ the mental health services, or at least the Ministry as the agent for the public, owns mental health services. Perhaps though, this is to confuse means and ends in that being clear that we want open access to all aggregated reports doesn’t preclude a means of achieving it in steps. We will just have to see how this one pans out.

Page last updated: 10 November 2009