You can read a prior post below where I have spelled out a few particulars.
Clinical Trials in the US – Begin involving the physicians and patients at the point of care to achieve greater success and participation with Personal Health Records
By using a Personal Health Record Vendor such as Trialx that works with both the Microsoft HealthVault and Google Health, there’s a system, as it directly involves the patient and is setup to work this way.
Let’s face it everything is being built around the Personal Health Record by using Web 2.0 technologies, so Clinical Trials could benefit in the same manner, rather than trying to figure out how to build a new wheel here, just perhaps shaking down some new paradigms once more.
It’s not just for “those guys over there” and again we could surely use some mentors in the process.
The researchers have the right idea, now we just need to get the rest of the puzzle put together with adding Health IT, CEOs, etc. to the bandwagon to understand how the process would work, and it’s not that complicated. It can be done before federal guidelines could be issued too so what’s to lose here, as it just a matter of communication and processes or algorithms as I say. BD
There is no formal requirement to inform clinical trial participants of the results of the study, a situation which can leave them “confused, frustrated and, in some cases, lacking information that may be important to their health,” according to a report in the journal Archives of Neurology.
But neither federal guidelines nor institutional review boards generally require disclosure of results at the conclusion of a study – even if the study is stopped early – any many participants are never told the outcome.
The authors, from the University of Rochester Medical Centre in the US, have drawn up a method to routinely inform patients of study results, based on the publication of a media release from the investigators immediately after a press communication from the sponsor, a phone call to the participants from site staff, and a conference call for research participants two weeks after the results were released.
Are electronic and personal health records inevitable? – Sure they are but we need education and mentors to make it work!