More clinical trials have moved to India and China, but one thing we might think about is the way we market and involve patients, that’s right involve patients and their doctors.  The first move here is to have information, something that has been lacking, and not just a software company with a data base of eligible patients calling and doing blast emails, or trying to get “social” through the social networks on the web.  Not to knock social networks in this effort as they can be helpful for folks comparing notes, and please by all means, use an alias for your own sake too.

The part this is missing is the records from the EHR and PHR systems for this to work.  The days of being an island are gone and when you combine PHR and EHR information, you can quickly find a match, and encourage physicians to advise patients that they might have an opportunity for a clinical trial.  Bringing all 3 together, Clinical Trial information, the PHR and EHR will serve to accelerate the participants.  One such program does this for the PHR:

TrialX.org – Clinical Investigator Sign up Now Available – Integrates with HealthVault and Google Health PHRs to locate available clinical trials based on health records

The EHR comes in to play when information is sent to the PHR, then the patient has specific information relative to their conditions and medications that is current, and the TrialX program will search based on those parameters.  Again, it’s all 3 areas coming together and once matches are found, it’s a simple solution for the patient to make contact and communicate with an investigator.  Otherwise it is a fragmented process working with fragmented pieces of information, getting nobody anywhere very fast.  There’s a widget on this site to give it a try for a simple search

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Both Google Health and HealthVault work with TrialX. 

There are 2,800 drugs and medical therapies in development.  Again, everyone can have a website to sign up which may capture a few, but again, such methods require quite a bit of data input, and if looking for more than one trial, duplicating the effort with having to enroll at different websites. 

Many individuals may not clearly understand the trials as well and fear they may be getting a placebo, and placebos of course are not used in all trials, especially oncology. 

Recently in the news is the fraud story involving a clinical trial company, which doesn’t help along with the physician who faked a series of studies, which has even put many physicians on edge. 

The main site everybody mines is ClinicalTrials.gov,sponsored by the National Institutes of Health, which is good, but you can spend a lot of time digging around there and wouldn’t it be nice to have that process automated with an instant match as Trialx does that for you.  Integrate the search with an EHR and you have removed a few lengthy steps in the process as well, again the success of Clinical Trial enrollment needs current updated information, which the PHR and EHR can provide for you, without the long lengthy web searches. 

So once more, until the information is current, real time and filtered in a manageable format, the fragmented marketing and information recruiting services of clinical trials will continue to suffer.  It’s all about bringing clinical and educational information down to one level where we all can work with it and be able to make intelligent choices.  BD

A year ago, U.S. researchers launched what they deemed a high-priority study to determine if women with an often-fatal type of breast cancer could live longer by taking a specific combination of drugs. If the study found that to be true, the average rate of survival -- four years -- could be significantly extended.

A worthy question to address? It would seem so. But the answer may be a long time coming.

The U.S. arm of the international trial got underway nine months behind those in other countries. And researchers now expect to enroll only 350 U.S. patients of the original 3,500 sought.

Medical clinical research slows for lack of patients - Los Angeles Times

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

Drugmakers Seek to Cut Red Tape to Speed Cancer Trials

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

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