At the AHIC event earlier this week, there was a third panel that presented to the AHIC and HHS. Their topic was focused on the need to link Clinical Research to Clinical Care, or more specifically, clinical researchers’ desire to tap into the treasure trove of data resident in health records. Apparently, this request to AHIC to develop policies to enable this capability has been an ongoing issue/request for at least a couple of years. Based on the passionate presentations of some on this panel, one could sense a fairly high-level of frustration.
One of the presenters, Greg Simon of the Milken Institute funded Faster Cures stated it quite clearly, to paraphrase: …we have a complete disconnect between the Care Community and the Cure Community.
Another presenter, Rebecca Kush of the standards consortium CDISC, also made an important point that with the strong push for EMR adoption, now is the time to harmonize the needs of clinicians with those of researchers. This reminds me of a conversation I had with an executive from Amgen wherein they did attempt to collect data from clinical systems on breast cancer patients but the data was so inconsistent as to virtually worthless. This would seem like a golden opportunity for an organization like CCHIT to take EMR certification one step further in support of clinical research needs. But CCHIT is gong to need the guidance and blessing of AHIC/HHS before it would proceed down that path.
Where’s the Consumer?
While this panel presented some compelling arguments for the need to connect clinical care and clinical research, what I found very disturbing was the complete lack of discussion or acknowledgment that there is a consumer involved here, a consumer who’s records you wish to access. When I asked a friend in the research sector about this he stated that researchers are miffed about HIPAA as they beleive it has hindered their ability to access records/data so the last thing they want to discuss is having to go through the consumer to get to the data.
Sorry Charlie.
You want my data, well you better ask for it first and ask nicely by clearly articulating how that data will be used, by whom, and what you will do with the data once your research project concludes. I don’t mean to be a burden, and I do want to help you, but I also don’t believe this is an unreasonable request. I hope you understand.
During follow-on discussions there was some stated commitment by AHIC that this issue will be put on the front-burner for the successor organization, AHIC 2.0. We’ll have to wait and see but based on experience to date, I’m not going to hold my breath.
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