Nothing about me without me!
This idea of NAMWM should be a basic right for all users of health care including ACT clients. But how to put it into practice? And how might NAMWM affect what clinicians record and what clients get to read?
I have an interest in EMRs – electronic medical records – having been involved with the design of the PACTwise database over many years. I have some questions including this partial list:
- Should EMRs incorporate ways for clients to access information?
- Is it necessarily good for clients to see everything recorded?
- Are there times when information should be withheld?
- Will knowing clients are able to read what clinicians are writing change the way clinicians record information?
- Are there differences between the clients and information recorded in an ACT program versus for example an oncology clinic?
- Should clients have a way to record their own observations in the EMR?
Let me take these on one at a time.
Should EMRs incorporate ways for clients to access information?
Yes, yes, yes. The courts in both Canada and the US have decided the issue – patients (clients) can request and must be provided with copies of their medical information.
Is it necessarily good for clients to see everything recorded?
Maybe not but the alternative – paternalistically protecting patients is probably worse in my opinion. In a 2010 report to the British parliament titled Equity and excellence: Liberating the NHS the authors note that “We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.”
Are there times when information should be withheld?
Maybe. I do think there are occasions where clinicians should be able to record things that perhaps aren’t immediately shared with a client. This violates the principle of NAMWM and maybe feels like a bit of a shaky answer on my part. I’m open to discussion and need to think this one through more.
Will knowing clients are able to read what clinicians are writing change the way clinicians record information?
Yes, probably. Is that a bad thing? Probably not. If I knew patients were reading my notes I’d likely be more careful, not in a politically correct way but in a more “sensitive to the effect of my words” way. I think I can adjust.
Are there differences between the clients and information recorded in an ACT program versus in an oncology clinic?
No. To treat mental health clients as ‘different’ is to add to the longstanding stigma around mental health and mental illness.
Should clients have a way to record their own observations in the EMR?
Yes. To create a portal to an EMR for clients by which they can read and access information in their record while denying them a chance to input anything seems misguided, giving an implicit message of “you can look but not touch!” Clients should have ways to add their thoughts. The goal need not be to turn the EMR into a kind of Facebook page with ongoing dialogues. There can be a middle ground allowing clients to flag information they want to comment on without this leading to clinicians having to revise their observations and assessments.
Kevin, Roman and I will be at the OAA Act III – Beyond the Standards OAA International ACT Conference in Niagara Falls October 26-28, 2016. If you’re there have a look for the PACTwise table and stop by. We’d be delighted to meet you and hear your thoughts about EMRs, about ACT, about making things better.
If you haven’t registered for the OAA conference just click the logo at right to get the conference brochure.