When does patient follow-up cross the line

Peggy Zuckerman peggyzuckerman at GMAIL.COM
Sat Mar 18 06:35:47 UTC 2017


I am concerned about genomic information which may not initially be
relevant to a patient's health, is incidental to the current diagnosis or
is lacking any  'actionable' therapy.  Thus, a genetic expression or
mutation, for which there is no current therapy, will not be reported to a
patient.

This is surely both paternalistic and pessimistic. The paternalism is
couched in terms of protecting the patient from distressing news, as 'there
is nothing which can be done."  (Of course, that same phrase may spur some
patients to seek another opinion, but that is another discussion.)  The
pessimism implies that there will never be an answer or treatment to be
found, which is an indictment of the research that changes medical care
every day.

Moreover, if the parties withhold information due to lack of potential
treatment, are those parties not thereby obligating themselves to continue
to monitor the patient and the research or emerging treatments for the
naive patient?  Would it not be better to give all the information to the
patient in the most meaningful format available.  That sharing of
responsibility and the uncertainty of the value of the data may be the
solution to open-ended follow up.

Peggy Z

Peggy Zuckerman
www.peggyRCC.com

On Fri, Mar 17, 2017 at 5:48 PM, Vic Nicholls <nichollsvi2 at gmail.com> wrote:

> Thank you Dr. Graber for the link.
>
> What I think might be more helpful on both sides is to use the surveys for
> that and allow patients to opt in. As what was pointed out, a student might
> see someone for an issue, go back in and they get treated for a STD. While
> back in 'the day', it might have been ok to read people's records, you tell
> people this now and it will create division among professionals and
> patients. Giving the chance for people to opt in creates good will.
>
> When your records are a mess, when doctors don't read them or mis read
> them, its just better to clear your mind and get a fresh view of a patient.
> We'd appreciate it and I'm sure you all would want the same thing.
>
> Vic
>
>
>
> On 3/17/2017 10:48 AM, Mark Graber wrote:
>
> Experts become so by having timely and accurate feedback on their
> performance.  With the demise of autopsies, we’ve lost the the powerful
> feedback that the post-mortem provided.  If our goal is to improve
> diagnostic performance, we need high-quality feedback, and more of it.
>
>
>
> HIPAA provisions create an ethical hurdle in this regard – we could learn
> a great deal from following-up on patients seen previously, but when does
> this violate the ethical imperative to respect the patient’s privacy?  This
> article published in the “ACP Internist” explores this issue.
>
>
>
> https://acpinternist.org/archives/2017/03/medical-education.htm
>
>
>
>
>
> Mark L Graber MD FACP
>
> President, SIDM
>
> Senior Fellow, RTI International
>
> Professor Emeritus, Stony Brook University
>
>
>
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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