Unsurprisingly, your sitemaster’s interest was piqued by a paper in BMC Health Services Research on the use of patient educational technology (PET) as a core component of their clinical practice in prostate cancer management by two urology practices in Calgary, Canada. The full text of this article by Baverstock et al. is available on line for interested readers.
Basically, the two urology practices have compiled and maintain a PET library with 15 unique prostate-related educational modules that address such topics as:
- The prostate itself
- The role of PSA testing
- The diagnosis of prostate cancer
- Treatment options for the management of prostate cancer
- Potential side effects of treatment options
However, we have not seen the detailed content of the PET library, and we did note (unfortunately in our opinion) that none of the 15 modules appear to be focused on either active surveillance or watchful waiting as management options for specific categories of prostate cancer.
As described in the article,
Upon being diagnosed with localized prostate cancer, patients are “prescribed” access to the PET library. Non-English language patients or patients with cognitive deficits are still offered access to the PET library on the assumption that a friend of family member could assist the patient in reviewing the materials. The library is freely available online, using any internet-capable computer. Patients log into the library using the access credentials provided by their physician as part of the prescription. These login credentials are unique to each patient. Each patient is provided with a handout containing the login instructions.
This process obviously permits the practices to closely monitor use of the PET library and its content by individual patients (or their surrogates, such as wives, partners, daughters, etc.).
In the paper, the authors note the following:
- Of the 394 patients given access to the PET library
- 123/394 (31 percent) actually logged in and viewed at least one module.
- 94/394 (24 percent) logged in more than once
- Informational needs of patients diagnosed with clinically localized prostate cancer who logged into the PET library changed over the course of their diagnosis and treatment.
The rate of use of the system (which seems low) prompts one to ask whether the patients were using other online systems to seek information rather than the proprietary system offered by the two practices. It is hard to believe that, in this Internet-connected age, newly diagnosed prostate cancer patients weren’t going somewhere on line to seek helpful information about their risk for prostate cancer.
While it is difficult to assess the degree to which the PET library system described by the authors was “effective” in achieving its goals, The “New” Prostate Cancer InfoLink does believe that physician-endorsed access to and use of appropriate educational information through a PET library of some type is valuable for newly diagnosed patients, and also for those patients who need to determine whether to have such tests as PSA testing or prostate biopsies based on their personal risks for prostate cancer. To that degree, we praise Baverstock and his colleagues for their efforts to (a) offer patients simple access to relevant on-line information and (b) track its use and its utility.
On the other hand, The “New” Prostate Cancer InfoLink would argue that the best such systems are going to have content that has been developed and is kept up to date by an independent set of prostate cancer educators who have no vested interest in exactly how individual patients get treated. It might be possible to develop such a system through which individual urology practices could “brand” such a site as being offered through such individual practices, and thus offer precisely the same PET library of information through hundreds of different clinical sites — each with its own individual log-in system.
Filed under: Diagnosis, Living with Prostate Cancer, Risk | Tagged: education, library, module, prescribe, technology |
THE "NEW" PROSTATE CANCER INFOLINK 
I addressed this issue some time ago because I recognized that newly diagnosed men and their caregivers were in a quandary because their treating physician was not explaining the various treatment options, how they are administered, the side effects that may be experienced, and how those side effects could be addressed with my paper Newly Diagnosed –- Some Basic Considerations
Dear Chuck:
I think your paper addresses the topic of what (ideally) men need to know or learn when they get diagnosed, and of course there is an enormous amount of information available about this now (some of which is excellent and much of which is less than excellent), and much of it is easily accessible through the web.
However, that is not what the paper described above is about. It is about whether patients actually use such information when it is actually “prescribed” for them by their doctors and made available through a specific type of system by the doctors’ own practices.
The information actually provided by these two practices in Calgary may well have been wonderful.
My point is that it doesn’t make any difference how good or bad the information is if men don’t use it, and it was surprising to me what a low percentage of patients who were effectively asked to use the information provided by these two practices failed to even glance at it. (We know they failed to even glance at it because only 31% of the patients logged on to the web site even once!) If they never even glanced at it, they can’t have any basis for making decisions about whether it might have been useful or not.
Hi Chuck,
You have been working to empower patients for a long time, and I’m guessing the number you have directly helped is in the thousands. I’m interested in your impression of the proportion of patients who want involvement versus the proportion who want to put their cases on automatic pilot, meaning management and decision making by the doctor. I’m also interested in ways you have found to move the latter to the former.
Like Sitemaster, I am a bit discouraged by the many patients I know who seem to have had little involvement in managing their own cases. I know of some doctors, including a few good ones, who encourage such abdication. I know of other doctors who are all about patient empowerment.