THE "NEW" PROSTATE CANCER INFOLINK

As online technology has gradually improved we are starting to see the development of online health information management and outcome services that are designed for use by cancer patients in general and prostate cancer patients specifically.

We are not referring in this article to tools that calculate specific risk factors (e.g., the Kattan nomograms, the Partin tables, and others). Rather, we are talking about systems that allow prostate cancer patients to accumulate all of their relevant medical information in one place, track it over time, and share it with others as appropriate (a sophisticated type of personal health record). Here are some of the services that we  currently know of:

• Patients Like Me was started back in 2005, so it is the “grandfather” of online patient data sharing systems. It is only now starting to offer its services in the cancer space, but what it allows patients to do is to choose what data they want to place on line in standardized forms and then share that data with other patients so that they can learn from each other. The data that is uploaded to Patients Like Me may be shared (in a completely anonymous form) with researchers, bio/pharmaceutical companies, medical device companies, etc., in the interests of improving available treatments for specific disorders, but levels of patient privacy are specified through a detailed privacy policy.

• Navigating Cancer is a new and freely available service that is currently in a beta phase of development. In addition to providing a bunch of basic information about prostate cancer and its management, it allows the patient to compile and maintain relevant information that is of potential value for ongoing discussions between the patient and his doctors, including medical history, a treatment calendar, a personal record calendar (for recording how you have been feeling, what you ate, how much you exercised, etc.), your drug regimens, etc. At present this service is probably of greatest value to patients with more advanced forms of prostate cancer who are seeing a medical oncologist or a urologic oncologist as opposed to men with localized forms of prostate cancer, but we have little doubt that the service will evolve. Click here to look at Navigating Cancer’s initial prostate cancer services. Again, privacy policies are in place to ensure that you retain appropriate controls over your data.

• A national consortium of major prostate cancer centers is currently developing an interactive system that will allow surgical patients to track their outcomes over time and compare their personal outcomes with other, similar patients. This system will include data related to risk for disease recurrence, recovery of continence,  and sexual function post-surgery. Earlier this year The “New” Prostate Cancer InfoLink collaborated with the development team to get initial patient reactions to the proposed output of this system.

If people know of other systems out there that allow prostate cancer patients to accumulate and track their prostate cancer data on line with appropriate security constraints, we would be interested in hearing about these.  (For example, we were under the impression that the Prostate cancer Research Institute had initiated development of such a system.) Clearly the combination of traditional personal health records with such disease-specific systems are potentially powerful ways for individuals to be able to manage personal health data over time and ensure that all that data is accurate and up to date, given the common need to be able to communiocate efficiently and effectively with more than one health care provider.

Filed under: Living with Prostate Cancer, Management Tagged: | data sharing, outcomes, personal health record