As Diccon Hyatt points out in a story on page 4 of this issue, December 21 is the shortest “day” of the year. And the darkness persists into the first week in January.
That darkness is our cue at U.S. 1 to hunker down with family and friends, take a one-week break from our normal schedule, and return to the streets and offices on Wednesday, January 4. We hope that issue will be a bright spot in your day.
Meanwhile if you need to communicate with us during the holiday week the best means is by E-mail: Classified ad inquiries should be directed to firstname.lastname@example.org. Display ad inquiries to email@example.com. Event listings to firstname.lastname@example.org. And letters to the editor and news releases to email@example.com.
May your holiday(s) be merry.
#b#To the Editor: Clinical Trial Info#/b#
Thanks for Diccon Hyatt’s December 14 cover story reporting on hopeful progress in cancer research. Janice Mehnert says it’s hard for patients to know about clinical trials. Patients need not depend on their clinician for this information. A good resource is PatientsLikeMe.com, a patient network and real-time research platform. As described: “Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. They generate data about the real nature of disease … it is a reliable source for real-world disease information and a clinically robust resource.”
Another resource that I personally found very useful: the Association of Cancer Online Resources (acor.org), a free lifeline for those affected by cancer and related disorders. I accessed one of the 142 online communities to get 24/7 accurate information and support. Each community has a knowledgeable facilitator. Patient and caregivers share information about everything from what clinical trials might be available to long term side effects.
The Society for Participatory Medicine (http://e-patients.net) is a pioneer in this area — advocating the use of technology to transform healthcare. Internet access — not only to online information, but also to others with the same health condition — empowers patients, especially those with chronic illness and rare diseases.
In today’s healthcare climate, it’s more important than ever for all kinds of resources to be available to patients and caregivers. I commend the Cancer Institute of New Jersey for transcending the potential digital divide; senior citizens are less likely to be Internet savvy. In CINJ’s lobby at a kiosk, anyone can sit, type in answers to a few questions, and within five minutes print pertinent information on a diagnosis or therapy. The CINJ library is another fabulous resource, free to all. Not every patient wants to “know everything” about his or her prognosis, but for patient and caregivers who seek to find information, the resources are there. Ask a librarian where to begin.
Barbara Figge Fox
Editor’s note: Barbara Fox is a senior editor of U.S. 1 who has written frequently on issues related to patient access to healthcare information.