What Is Available Online?
Many people seek information about cancer online, where there is a broad range in the quality of information and support.
Examples of available information and support:
General information about a cancer, including what it is, the likely prognosis, and typical treatment options
Support from institutions and nonprofit groups, based online or in certain communities
Websites dedicated to a focus on clinical research and trials of novel therapies
News about developments in cancer that may not be specific to one cancer type
Online groups of patients and caregivers with a specific cancer
Much of this information can be invaluable, but patients and caregivers should be smart consumers of online content to better judge how to prioritize the information they find. It is also appropriate to use this information as a supplement rather than a substitute for guidance by your medical team.
With access to the right information, many patients and caregivers can become knowledgeable about their disease and be active participants in their own care decisions.
Which Online Information Can Be Trusted?
Regardless of the specific topic, we should assess the source of new information. This includes clarifying who is providing it, their qualifications and expertise, and the motivation of the individual and organization. Are the contributors clearly defined? Do they have specific training and experience, or are they making recommendations without specific qualifications? Is the organization a nonprofit organization or group with a mission to offer free medical information to the public, or is it marketing services or products? The public should be skeptical of any “secret” treatment or any strategy being sold that heavily promotes a “cure.” If something seems too good to be true, it almost certainly is.
Are Online Patient Groups a Helpful Source of Information?
Beyond professional training, another form of expertise comes from speaking with other people who have followed the same path as you. A growing number of online groups of patients with cancer and their caregivers have formed to share their knowledge, experiences, and support. Some may be on platforms like Facebook or PatientsLikeMe, whereas others may be independent. Some are large groups about breast cancer or lung cancer or another common cancer, whereas others are narrow and focused on a specific mutation. They can serve very different but valuable purposes, including partnering with researchers to promote research projects that may offer new treatment options.
Each group has a unique personality, focus, and tone. Do the contributors share information based on medical research, or is an online group dominated by zealous people without medical qualifications promoting hyped but unproven treatment approaches? Is the focus primarily on providing sympathetic support and guidance about what can be expected with a treatment or possible complications?
Whether provided by physicians, health care institutions, nonprofit organizations, patient groups, or other organizations, online content and interactions can provide a helpful service to patients, but it is important for the public to be wary and remember that the quality of this information may range from extremely helpful to dubious and even harmful.
Box Section Ref ID
Published Online: July 3, 2019. doi:10.1001/jamaoncol.2019.1576
Conflict of Interest Disclosures: Dr West founded and serves as the President of the cancer education nonprofit Global Resource for Advancing Cancer Education, an unpaid role.