Loading ...For more information on Personal Health Records, I would check a good blog called The Medical Quack. So far its the only blog I know with links to GHealth and Hvault where you can store your Personal Health Records. Check it out!
Keeping Your Personal Health Records From A Clinical Trial, Or To Get In a Clinical Trial
Posted by: FeaturedPosted in: Administrator
Posted on: May 6, 2010
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May 6, 2010 at 3:42 am
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Craig @CraigLipset
May 7, 2010 at 5:58 am
Thanks, Dan, for keeping the discussion going on trial participant’s access to data.
In the pharmaceutical industry, we are cautious about inducing patients to participate in clinical trials. We do not want to make patients feel “forced” to participate in any way, and so are very cautious about giving incentives to patients.
But a patient’s data is THEIR OWN data. And there are two things we can all work to give back to patients who participate in our studies:
THEIR DATA — The information that the participant has shared with us that we capture in a study database, and using tools such as free personal health records are a great way to do that electronically. Patients can then use that information (perhaps with their treating physician) to improve their own health. As you note, patients unfamiliar or uncomfortable with electronic health records should simply ask for paper copies.
WHAT WE LEARNED — Wherever possible we should share with participants what we have learned from their participation in the study. We often publish results in scientific journals. These are not accessible to most patients — Often the journal may require an expensive subscription, and the language used in the journal article may not be something a patient can interpret. Wherever possible we should construct summaries of these results in language a patient can understand. Not marketing material — results of the study in lay language.
I am not talking about openly sharing a blinded study database, or sharing one patient’s results with another. This is patient’s accessing their own data, and benefiting by learning the same results that we have learned. It’s all do-able today. And it’s just the right thing to do.
@CraigLipset
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Administrator
May 7, 2010 at 8:45 pm
Thanks Craig. We def think its important that EVERYONE have access to their personal health info. Just another benefit of clinical trials is receiving excellent medical examinations and tests, and the participants ought to have this info available to them! Thanks.
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Darian Knight
June 6, 2010 at 5:31 am
Fantastic information! I’ve been looking for something like this for a while now. Thanks!