NCI and the National Library of Medicine have joined forces to make PDQ's cancer information summaries for health professionals and patients available through PubMed Health, an online resource that specializes in reviews of research on the effectiveness of interventions in clinical care. The health professional summaries are available in the Clinical Guides section of PubMed Health, and the patient summaries are available in the For Consumers section.
This article is part of a series of stories related to cancer communications. You can read more articles in the series here.
Physician Data Query Offers Authoritative Information for Cancer Patients and Professionals
"Wikipedia, Twitter, and blogs, oh my!" That could well be the lament of newly diagnosed cancer patients, their families, and caregivers as they anxiously enter the cancer "information superhighway" for the first time.
"For a lot of new patients, stepping into the world of cancer is like going to a foreign country where they don't know the language," said medical librarian Naomi Miller, manager of Consumer Health Information at the National Library of Medicine (NLM). "After a patient gets over the initial shock of receiving a diagnosis of cancer, the next thing they want to know is: What is the outlook, and what are the treatments I need?"
For the past 30 years, patients, their physicians, and other health professionals have relied on NCI's Physician Data Query (PDQ®), a comprehensive and authoritative resource for up-to-date, evidence-based cancer information. PDQ's cancer information summaries, available on NCI's website, address prognoses and treatments for many adult and pediatric cancers, as well as supportive and palliative care, screening, prevention, genetics, and complementary and alternative medicine. Most summaries come in two versions—one tailored for health professionals and the other for patients.
"What makes the PDQ cancer information summaries unique is the fact that they are…evidence-based and are maintained by PDQ editorial board members who are experts in their fields," noted Dr. Margaret Beckwith, acting chief of NCI's International Cancer Research Databank Branch (ICRDB), which oversees and maintains the PDQ database. "The summaries are revised and updated in a very timely manner as new information comes in." All of the PDQ treatment summaries, and many of the other summaries, are also available in Spanish.
Created by Congressional Mandate
The PDQ database resulted from congressional mandates that NCI "continue and expand programs to provide physicians and the public with state-of-the-art information on the treatment of particular forms of cancers, and to identify those clinical trials that might benefit patients while advancing knowledge of cancer treatment."
In the early 1980s, NCI assembled an expert editorial board to develop treatment information summaries. That initial board has since expanded to six separate PDQ editorial boards, each of which includes 15 to 30 academicians, clinicians, nurses, and other specialists, Dr. Beckwith explained.
Dr. A. Kim Ritchey, chief of Pediatric Hematology/Oncology at the Children's Hospital of Pittsburgh, joined the PDQ Pediatric Treatment Editorial Board in 1997 and became the board's editor-in-chief in 2000. "Being on a PDQ editorial board is a public service whereby we keep health professionals and patients informed about the best current understanding of treatment for cancer," he said. "We feel very dedicated to ensuring that the treatment summaries we produce are both accurate and timely."
The PDQ editorial boards review the peer-reviewed biomedical literature monthly to keep the cancer information summaries up to date. At the heart of this process, ICRDB and contract staff regularly search the NLM PubMed database for research studies of greatest relevance to each PDQ editorial board. "[The editorial boards] provide the expertise to judge whether a published report on a clinical trial is of high enough quality to be added to a cancer treatment summary," Dr. Ritchey explained.
Online and Beyond
The PDQ database predated the Internet revolution. Since then, scientists and information researchers have studied and compared PDQ's cancer information summaries with the often bewildering array of online resources that now offer information about cancer, including Wikipedia.
For example, a study published last fall in the Journal of Oncology Practice compared cancer information on Wikipedia with that in PDQ's patient summaries. The researchers concluded, "although the wiki resource had similar accuracy and depth as the professionally edited [PDQ] database, it was significantly less readable."
NLM librarian Miller commented, "There is a place for 'crowd-sourced' information like Wikipedia. However, PDQ is the best place to start a search for cancer information because it's authoritative and updated frequently."
ICRDB acting chief Dr. Beckwith noted that the PDQ patient summaries now contain additional background information not found in the health professional versions, as well as numerous medical illustrations to help visually convey concepts such as anatomy, tests and procedures, and disease staging for various cancers. In the near future, the patient summaries will be offered in formats designed for mobile devices, she said.
"We're also reformatting all of the health professional summaries," Dr. Beckwith added. "We're trying to make them more accessible in a web environment by adding more tables, figures, and bulleted information, by breaking up the text, and by adding more links to related information." Eventually, NCI plans to make all of the PDQ summaries available for e-book readers, such as Kindle and Nook, she added.