THE "NEW" PROSTATE CANCER INFOLINK

Many prostate cancer patients will recognize statements made by other patients and reported in a study just published in Cancer Nursing and also available on the Medscape Oncology platform. Interestingly this study comes from a group of Norwegian nurses who built an online e-mail support system for their prostate cancer breast cancer patients.

Grimsbø et al. — recognizing the need of their patients to be able to communicate easily and conveniently with their health care providers about issues that did not necessarily require an office visit (or even input from a doctor) — built and staffed an online patient-nurse communication (OPNS) service which was specifically intended to allow and encourage on-line patient-nurse communication about issues that were concerning to patients before, during, and after their treatment.

The discussions that they describe — and the fears and concerns that their patients express — very closely reflect the types of fears and concerns that we see all the time on our own social network or on LISTSERV systems such as  the Prostate Problems Mailing List.

Readers will also be familiar with the fact that the major topic of concern for prostate cancer patients is the impact of treatment on their sex life, followed by concerns about the result of the latest (or the next) post-treatment PSA test. By comparison, the women with breast cancer were much more concerned with treatment-related fatigue and their ability to cope with all the day-to-day pressures of work, life and family.

For those of us who have been providing and/or involved with on-line educational and informational support services for 15+ years, it is both gratifying and mildly amusing to see the professional medical community start to experience and appreciate the opportunities and the problems of trying to help and support patients through the use of such services.

We congratulate Ms. Grimsbø and her colleagues for taking on this opportunity — and clearly being able to offer their patients a series of badly needed methods to get support and help from well-informed health care professionals through a convenient on-line system. We hope that they will be able to use this experience to build systems that allow for collaborative on-line support services that take advantage of the knowledge of skilled nurses and well-informed educators and patients to build truly collaborative on-line information systems over time — at least in Norway. It may be harder to do this in America, where a single typo could expose an entire hospital to the wrath of a distressed patients and his (or her) legal eagles!

Filed under: Living with Prostate Cancer, Management | Tagged: education, information, nursing, on-line, support |