Hi All, Some quick comments on Patient involvement in EHR design, development, deployment and usage. 1)At first glance it appears necessary and may lead some to mandate participation. 2)A personal observation is that Patient objectives and goals are sufficiently diverse from those of the Providers that a merging would be difficult if not impossible 3)Patients are generally oriented toward successful outcomes; the means and procedures to arrive at a successful outcome are less important, and in some cases to be suppressed. 4)Patients are members of families and groups that have a keen interest in Healthcare and tend to respond to Providers as group participants and/or individual Patients, making it difficult to determine whether the Patient or the group is responding to a topic. 5)How Patients deal with Providers is normal in my opinion since they have a history and a pre-disposition; much like Providers.
Some involvement with Patients during design, development and especially deployment is necessary as is great PR. In the great balancing act that continually occurs in society there is only one set of tablets that appears to have stood the test of time and they were hand carried down the mountain. Whatever gets deployed must be acceptable. The Patients have to buy into this at some point. Regards! -Thomas Clark ----- Original Message ----- From: "Thompson, Ken" <[email protected]> To: "'Christopher Feahr'" <chris at optiserv.com>; "Thomas Beale" <thomas at deepthought.com.au>; <openehr-technical at openehr.org> Sent: Tuesday, February 03, 2004 2:49 PM Subject: RE: What HIPAA means to you - a brief description > Chris - > > Your comments are interesting, and largely accurate in my experience. Two > things come to mind that could help address some of the issues you describe. > > First, we could encourage or require patient representation at all levels of > design, implementation, purchase, training, etc. for EHR system. They seem > to be routinely left out of the conversations in these forums, and I suspect > their presence would shift the tone of the discussions considerably. > > Second, we could look to the airline industry model for litigation > management. Black boxes would never have gotten off the ground without some > grace being offered in return for having actual facts captured about how an > aircraft was operated. > > Of course, you could also shoot the doctor 99% of the time when a patient > died, (about the ratio that pilots experience relative to their passengers), > but that, in the end, might leave us with very few doctors since medicine > doesn't seem to be nearly as certain as flying...:-) > > Best Regards, > Ken Thompson > Manager, WebCIS Development/System Architecture > Information Services Division > University of North Carolina Health Care System > 200 North Greensboro Street > Carr Mill Mall, 2nd Floor > Carrboro, NC 27510 > (919) 966-9195 Voice > (919) 966-2110 Fax > <mailto:gthompso at unch.unc.edu> > The opinion(s) of the sender of this document do not necessarily represent > the opinion(s) of UNC Health Care or its management > > > > -----Original Message----- > From: Christopher Feahr [mailto:chris at optiserv.com] > Sent: Thursday, September 04, 2003 10:53 AM > To: Thomas Beale; openehr-technical at openehr.org > Subject: Re: What HIPAA means to you - a brief description > > > Thomas, > I think I'm beginning to see the core of provider push-back regarding the > type of EHR-based "accountability" system you are describing. Arguably, > their existing paper records are serving this exact function now. In fact, > it is generally accepted that, with regard to record entries that would > have supported or justified a doctor's actions, "if it ain't written down, > it didn't happen". And, of course, it is also frequently pointed out by > plaintiffs, that "not being written down does not mean that it *didn't* > happen". > > I think doctors generally regard their medical records as their > "friends"... their best defense, should their decisions be challenged. The > only other defense would be to get a bunch of people to testify that the > doctor is a "good guy", has a long history of being careful and thorough, > etc. But doctors are also keenly aware that the HR is also the principle > basis for the plaintiff's case... hence, their preference for keeping the > things locked safely in their offices. > > With today's often undecipherable paper records, it is difficult and > expensive for a plaintiff to build a solid case, and it's even more > difficult to comb through a thick, longitudinal record and discover > patterns of negligence, incompetence, depraved indifference, etc.... but > what if that were trivially easy to do. What if a standard EHR could be > fed into Smoking Gun Pro, and out pops a perfectly articulated > complaint. Just staple on the blue paper cover and hand it to the > judge! What if the attorney who wrote the Smoking Gun Pro software erects > billboards, inviting patients to email copies of their EHR to him for a > free scanning to see if there is anything juicy and "actionable" contained > in them? Heck, he could put a copy of Smoking Gun Pro on the web and > invite patients to scan their own EHRs. > > As we get closer to real implementation of the EHR concept, we may to have > to conceive of a completely different trust-model between healthcare > providers and the communities they serve. In general, I think the EHR > system will have to be held up as such a reliable and provable basis for > trust that we can simply agree to REMOVE malpractice litigation from the > table, as a way of establishing a basis for distrust. It may come down to > doctors choosing a voluntary, public, but fully automatic "competence" > and/or "trust" rating, derived from the EHR... perhaps, with a standard > mentoring or mandatory educational protocol kicking in, should a provider's > rating drop below some agreed-upon level. > > Either way, this will be a *very* emotional discussion with providers... > and possibly with patients. > > Regards, > -Chris > > At 10:27 AM 9/2/2003 +1000, Thomas Beale wrote: > >Christopher Feahr wrote: > > > >>Tom, > >>Are your remarks here concerned only about *privacy* laws with respect to > >>EHR... i.e., patient and provider rights with respect to access and > >>disclosure? I can't think of any other general aspect of law that would > >>apply to EHR... at least not one that would benefit from the "uniform > >>model code" that you describe. > > > >THere are more, mainly to do with the medico-legal area. The original GEHR > >project developed a lot of them; I don't have them to hand right now, but > >the basic requirement of an EHR whcih one could imagine being required by > >law is: > > > >* the full informational state of the EHR at any past moment in time must > >be reconstructable such that it is clear what information was available to > >the clinician when he/she made he decision in question or took a certain > >course of action. > > > >In short, the EHR should act as the digital proof for all claims or doubts > >about what happened to patients and what clinicians did - and it works > >both ways - clinicians can protect themselves by using the EHR to prove > >that their decisions were reasonable given the evidence available at the > >time; patients (or their families) can also ask for the EHR to be > >"exhumed" to find out if this really was the case, if malpractice is > suspected. > > > >Now...since all this kind of investigation would lead to courts, the > >quality of proof would presumably have to be of interest to the > legislature... > > > >>In the US, the conflict and overlap between state laws and HIPAA is > >>actually part of the motivation for writing the HIPAA Privacy Rule. > >>It is expected the state laws will be eventually become aligned with and > >>"modeled" after HIPAA in the privacy area, although there is no mechanism > >>to ensure that. Incidentally, there are also areas of state-federal > >>conflict like "prompt pay" laws, with respect to the HIPAA Transaction > >>Rule... with no help in sight. > >> > >>Personally, I don't think legislatures should be making ANY rules that > >>are specifically about electronic records and information sharing... at > >>least, not until we have some sort of information authority or technical > >>review board to pass these proposals by. Well-meaning politicians have > >>written the Transaction Rule with the intent of helping patients and > >>providers. But the ill-conceived rule ends up increasing everyone's cost > >>and helping no one. > > > >yes, I agree with this comment - it is easy to imagine farcical laws being > >enacted - they need to be formulated with the informed advice of relevant > >IT & clinical informtion management professionals... > > > >- thomas beale > > > > > >- > >If you have any questions about using this list, > >please send a message to d.lloyd at openehr.org > > Christopher J. Feahr, O.D. > Optiserv Consulting (Vision Industry) > http://Optiserv.com > http://VisionDataStandard.org > Office (707) 579-4984 > Cell (707) 529-2268 > > - > If you have any questions about using this list, > please send a message to d.lloyd at openehr.org > - > If you have any questions about using this list, > please send a message to d.lloyd at openehr.org - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
