Advances in Pulmonary Hypertension

Editor’s Memo

PHA Web Site — www.phassociation.org — Best Kept Secret on the Internet

Whether you like to casually surf the Web and explore various medically oriented sites or directly seek specific information on a topic of interest, the Web site of the Pulmonary Hypertension Association (PHA) is an often overlooked treasure trove of valuable content. I say overlooked because we often view Web sites as part of a serendipitous search, as merely a means toward an end of retrieving the information we seek; but PHA’s site is a destination as well, a virtual labyrinth waiting to be discovered. And more people are discovering it—115,000 visitors per month to its 3000 pages, and 500 messages posted per week on its main message board. Physicians are always telling me how helpful it has been in directing them—or their patients and staff—to nuggets of information they could not have found otherwise.

Where else, for example, could you find information on such diverse topics in pulmonary hypertension as active clinical trials, the latest meeting on how patient advocates will discuss key concerns with their congressional leaders, an interactive map to search for a prominent physician in any state specializing in pulmonary hypertension care, or special events like a Christmas tree fundraiser that benefits the pulmonary hypertension community?

Navigating the site is easy. The topics are conveniently arranged to appeal to the visitor’s particular query or need. The links for healthcare professionals are clearly delineated and easily accessed. As the pulmonary hypertension community has grown, so has the need for an efficient roadmap with specific points of interest and signposts along the way to guide one toward a connection or network one seeks. This is extremely important at a time when improved communication at all levels—among patients, physicians, families, and allied healthcare personnel—can help in promoting clinical trial enrollment, an exchange of ideas on new treatment approaches, and an overall sense of where we stand in making such progress. In facilitating this communication PHA’s site serves as a forum and a vehicle to keep the pulmonary hypertension community working together.

Proof of the site’s value comes from numerous tributes to its role in the lives of the pulmonary hypertension community. Consider this comment from a patient, Marilyn Haney, posted in the “Our Journeys” section of the site: “I was diagnosed in mid 2004 with primary pulmonary hypertension. ‘I have what?’ Honestly, I had never heard of this disease. I dove right in to educate myself, beginning with my pulmonologist who referred me to PHA. The Web site, as well as A Patient’s Survival Guide, gave me a clear understanding of what PH is, what treatments are available, and what is currently happening to find a cure.”

As helpful as the PHA site is, PHA acknowledges its limitations and advises everyone by posting this message: “The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.” Yet the information provided on the site is perhaps the next best thing to a consultation in that it points patients and caregivers alike to the appropriate source or resource. By fulfilling that role, the site has become an integral part of the pulmonary hypertension community and we are grateful for its continuing evolution and the benefit it provides to us all.

Vallerie V. McLaughlin, MD
Editor-in-Chief