I am a strong advocate of offering patients the opportunity to participate in clinical trials, particularly if they have serious problems like cancer. I briefly touched on this issue in a recent note (see: Some Tips for Selecting a "Good" Doctor and a "Good" Hospital). I served for five years on an Institutional Review Board (IRB) in a large teaching hospital, a committee within a hospital charged with the protection of the rights of research subjects. Participation in clinical trials is not for everyone. However, the opportunity should be presented to patients, when relevant, in a way that they can understand both the benefits and risks of the offer..
I have posted a number of previous notes about personal health records (PHRs). which are usually web-enabled repositories for family health records. They can be an extension of hospital electronic medical records (EMRs) or independent of them, in which case the responsibility falls to family members to keep them relevant and current. I personally favor the first approach. One of the benefits of the web-based PHR is that it provides ready access to any information available on the web. For example and ideally, one could click on the name of a lab test or disease embedded in the record and link to a reliable medical resources that can provide additional information. Two of the PHRs, Microsoft's HealthVault and Google's Google Health, have now created a partnership with TrialX.org such that "matching trials based on [a patient's] Personal Health Record" can be discovered and reviewed.
I found the TrialX web site to be professional and well organized, allowing a search by disease/condition or by major disease category such as breast cancer, HIV, diabetes, depression, obesity, asthma. To test the site, I searched for breast cancer and was presented with a tabular array showing the clinical trial "focus" in the left hand column and pull-down menus for age, sex, location, and trial phase (Phase 1-4). The Wikipedia has an excellent article on clinical trials with a detailed explanation of these phases. One final recommendation. If you are considering participation in a clinical trial, ask your physician for a copy of the entire research protocol. He or she may be surprised by such a request but must provide it to you. Many of them can run to 100 pages or more but it will provide all of the details about the trial. You may need to find a physician or medical researcher friend who can sit down with you and help you interpret the document, but it will be well worth your time and effort.
As I was preparing this note, I came across and interview with Chintan Patel, a co-founder and CTO of TrialX (see: Guest Article: Google Health and HealthVault App Integration from the trenches). For my technical readers, here's what he has to say about the integration challenges he encountered with the two PHRs mentioned above:
In terms of technical integration both GH and MHV use standards-based REST and SOAP communication layers respectively. However, GH provides application development library support across multiple programming languages such Java, .NET, Ruby, Python and so on, whereas HealthVault is mainly available through .NET with a few open-source projects in Java and Ruby. At TrialX, we had to develop an in-house Python-based library to communicate with HealthVault that is now available as an open-source toolkit, pyHealthVault.
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