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I think that so long as the data is tagged as patient generated there is no problem. For various purposes you may want to exclude this data and for others you could include it.
In my opinion, one of the keys to realizing the full potential of the growing health information database will be to introduce through legislation or rule making a provision that very clearly defines de-identified data as no longer belonging to or being in control of the patient. This will remove the uncertainty around the use of aggregate data in the research process. While HIPAA alludes to this in provisions around Healthcare Operations, I think a more specific ruling would be beneficial.
Yes – I do agree with Bill Rowe that data quality is a potential issue. There a wide range of possible causes for these issues ranging from a lack of technical savvy to misinterpretation of the data needed to bias. For instance, a patient may feel uncomfortable reporting the actual amount of alcohol s/he takes in daily.
It will be a challenge but I think attitudes can change. I think education will be the key. Helping patients and providers to understand the societal benefit of being able to study this data in the aggregate would be a good start. Also, insuring that once this data goes into the cloud that it cannot ever be traced back to the patient will be important – that’s an area where ONC could help a great deal by setting standards.
In many ways I think ONC could help by getting out of the way. Many features we were intending to implement, based on patient feedback, had to be delayed in order to implement functionality in lign with the MU program.
I’m a geek and that’s too “Big Brother” even for me.
I would worry about the government becoming too involved and/or too prescriptive related to the care planning aspect of this measure. From my perspective, holistic multi-dimensional care planning is still in it’s infancy. This is particularly true as it relates to incorporation into the EMR. I would like to see ONC/CMS first just mandate that there be a multidisciplinary care plan but not provide any specifics as to the nature of the care plan. Let the development occur somewhat organically. Once the frameworks are in place, then additional direction could be provided to refine the process.
In some ways, I believe this is an excellent example of the old adage, “When the only tool you have is a hammer, everything begins to look like a nail.” Certainly the EHR could be a portal for the patient to seek information, become more informed, etc. But I think that decision making process centers around a personal relationship between the patient, their family and the provider. Just because EHRs can solve many problems, doesn’t mean it is the resolution to them all.
Welcome to Planning Room, jherbert. Do you agree with bill rowe’s comment that there are issues with reliability and validity of patient-generated health data? If so, are the quality problems caused by patients misusing eHealth tools or are they caused by something else?
jherbert, do you think that patients will accept that their de-identified data will no longer belong to them? What could ONC do to help patients accept this?
Thanks for your comment, jherbert. Could you give an example of some of the delays you encountered trying to implement functionality in line with the Meaningful Use program?
For some hospitals/providers, I think this might be better indeed, but for a lot of others, just getting them to be aware of the things that IT should do: patient registries, giving patients their data, secure messaging, etc. needed to be done. Probably some hospitals/providers can do better without the handholding, while others need some nudging.
A non-punitive, consultancy as needed on a case by case basis would be nice. If you’re doing well and have good plans to move forward, we just learn from you and go to someone else!
Facilitate bill evaluation. Create a “2nd Billing Opinion” service that will independently look at the patient’s bill and determine whether the charges are reasonable or not, and provide useful benchmarks that the patient can use in negotiations regarding their medical bill. Make it easy to submit a bill to this INDEPENDENT service – in fact make it the DEFAULT. Bills in excess of $1000 over a one year period should be automatically electronically submitted by the healthcare provider to this SECOND OPINION INDEPENDENT BILLING EVALUATION SERVICE – with a report going to both the patient and the provider. (Some providers will probably try to strongarm patients into waving their right to an Independent Second Opinion on their medical bill. This sort of bullying… more »
By providing an informed, easy to use, independent medical bill evaluation service, you will put downward pressure on absurdly high outlier bills that are ruinous for the poor and underinsured. « less