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Clinical Trials and Personal Health Records – New Resources on the Medical Quack

Posted Dec 20 2008 7:16pm

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I have written a few times about  TrialX.org and now there’s a widget I have added to the resource portion of the blog.  The widget will allow you to search a trial by name and has auto fill, so just begin typing the name and available trials populate to select.

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If you have a Google Health or Microsoft HealthVault PHR (personal health record) you can also use the data already in the PHR to simplify the process and find trials that are specific to all your health conditions, etc.  You can find the tool on two different places on the site, first under the PHR section as shown below:

Also, if you were using the look up section for clinical trials on the blog, I have also included a secondary location located underneath the updated clinical trial news listing.

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Both Google Health and Microsoft HealthVault have been working to add more vendors to their listings, and this is gold for the consumer, as it automates the process of taking records from the drug stores, from medical devices, etc. and add the information to the PHR, without having to manually enter the data with a keyboard.  The patient can also share any of the files or information with “whom” they choose, so the patient is in control here.  Think of it, doing your blood pressure, hooked up via USB to your computer, data goes into the PHR and you are done, all your medications from your drug store, once set up, there are there in every detail.  Nice!

Back to the clinical trials:

After you have all this information in your PHR, you can use it to locate clinical trials in your area.  So let’s say you were looking for one that addressed diabetes 1, but you also had gout, but the trial specifically did NOT want patients with gout, so that would not show and be ruled out, thus saving a lot of research and data mining time.  This is where the the PHR comes in handy to eliminate having to search for items either included or excluded for the criteria of participants in the trials.  You can always use the general search  as well.

Below are screenshots from both HealthVault and Google Health to show the Clinical Trial integration processes. 

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There is also a section for Clinical Trial Investigators to sign up.  The program is flexible and can be ported over to other clinical trial software that is perhaps already being used.

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Get an email alert when trials in your area matching your specifics become available.   This is a nice feature as otherwise it is up to you to remember to search from time to time or hear from someone else or maybe catch a radio advertisement.    This also allows for the investigator to remain in contact with all participants.  

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The Department of Defense is now working with PHRs and they too can benefit here as all their records when sent to HealthVault or Google Health will be ready to go.  Social Security likes PHRs as well as Beth Israel Deaconess in Boston and the Cleveland Clinic, who has a pilot beginning specifically aimed at using devices.   Japan can’t wait to get PHRs. 

American Well, video web cam physician consults has integrated with HealthVault and the group in Hawaii has promised to give me an update as soon as it gets rolling. 

Medicare likes PHRs and has a pilot program beginning in January. 

TrialX.org will also draft your letter to the investigator for you, so all the information they need is included.

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Here is a sample search, the criteria here was someone with prostate cancer, who also has diabetes and gout, lives in California, and only wanted the trials that were presently in stage 2.  You can also read up on Clinical Trials to find out exactly what stages mean as well.  So we have our matches here and they are “scored” at the far right hand side according to relativity.  When there is a 100% match, a link will be available to begin enrollment.   Those that do not exactly match show with a red X, so you might see one that has a red x for stage 2, and when you change it to stage 1, it is available for a simple example. 

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On the left hand side the trial names are all linked to the name of the program so you can easily read up quickly. 

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Sample Information and Enrollment Screens.  You need to sign up for an account, thus these are just general screenshots.  

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Anyway, if you are looking for Clinical Trials, give this a try and think about having your PHR connect to save some time and cut to the chase and if you find it helpful, refer others who may be looking to find and enroll in clinical trials.  BD 

Related Reading:

Keep clinical trial patients ‘in the loop’, say the researchers – Use a PHR to get the job done with some Algorithms

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

Are electronic and personal health records inevitable? – Sure they are but we need education and mentors to make it work!
Surveys Said: Hospitals Cutting Back on I.T. – Time to Get your PHR
Technology “It’s for Those Guys Over There” said the CEO – I Don’t Do Digital Notes
The Future – A Day of Going to the Doctor

Google Health Online Services – Connections Beyond Medications – Personal Health Records

Drugmakers Seek to Cut Red Tape to Speed Cancer Trials

HealthVault Personal Health Records gets a Facelift - Match records and find clinical trials

Personal Health Records – Who’s in the Know and Who has one?

Study Predicts Big Savings from PHRs (Personal Health Records) – Best Kept Secret in Healthcare?

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