Lidia Schapira, MD, FASCO
Dr. Schapira discusses the role online communities can play in the cancer experience and what patients can do to evaluate them.
Most of us turn to the internet whenever we need health-related information. These sources of information can range from scientific research articles published in scholarly journals, to patient information websites that provide medically reviewed content, to blogs where people tell their stories about their cancer experience. People with cancer know that the time they have with their oncologist is limited, so they sometimes turn to online communities for information and support. Connecting with someone who has had a similar cancer experience can be helpful because it provides a personal perspective as well as useful information . Online communities have made building these informal, personal connections much easier.
Online cancer communities are where groups of people with an interest in cancer can communicate through a website, instant messaging, or email. Users can post questions, answer other users’ questions, and contribute to resources in a shared space. Sometimes, people can join a community by just clicking a button or their membership may have to be approved by a group owner or moderator. Individuals may “lurk,” meaning that they read the posts in the community but do not post or interact with other users. Information is typically collected slowly and in small amounts. Multiple participants interact and determine what topics are discussed, which can lead to wide-ranging discussions. This is very different from what happens during an appointment with an oncologist, when large amounts of information are often given all at once by a single clinician or a few professionals working in a team.
Today, Dr Tanya Gupta and I published an article in the Journal of Oncology Practice called “Online Communities as Sources of Peer Support for People Living with Cancer: A Review.” Dr Gupta and I are both habitual internet users ourselves and are immersed in the tech-savvy culture of Silicon Valley, so we were curious about the role of social media in the lives of people living with cancer. The question we wanted to answer was quite simple: Are patients driven to the Internet to find information or to connect with others? We thought the answer could help people design new platforms and content for patients and family caregivers. So, we started by tracking the history of use of social media and identified academic, private, and charitable organizations that have made important contributions to the field. Dr Gupta interviewed leaders in each of these groups, including directors of nonprofit advocacy groups and cancer researchers. We also looked at research that has already been published and were disappointed with the results. The very few research studies that we found did not help us to draw sound, evidence-based conclusions. So we decided that it would be useful to write a summary for our colleagues in oncology to help them understand the history of research in this field and to alert them to the large number of online communities that currently exist and form part of the steady information “diet” of our patients. In our published paper, we recommend that oncologists discuss the use of social media openly and often with their patients, so doctors can understand and support their patients’ needs for information and peer support. We are now engaged in designing research to learn more about using social media to communicate messages that have scientific content and ways to harness the power of online communities to provide peer support. Patients and their loved ones will search for online communities for the information and support that they offer. Here are some of the things you should think about when considering joining an online community or starting or contributing to a discussion in an online community:
Is the community helpful and supportive? Although different people have different needs when it comes to online communities, there are some elements that all helpful, supportive communities will have. These communities have members who are supportive, informed, and nimble when responding to the concerns of other members. I also recommend that you find a group whose conversation style feels comfortable to you and meets your current needs. Ask yourself if it is a good fit.
How old is the community? Some communities are mature, meaning they have hundreds or even thousands of members, and their members may have been posting or reading posts for many years. For some, this broad base of member knowledge can be a great source of support. Other communities are new and don’t have as many active members. Some people may find it exciting to join a new community and to help shape the discussion and atmosphere of the group.
Is the community specific to my needs? A patient told me that she had joined several Facebook groups and that she found it helpful to know that many others around the country were getting the same treatment for the same type of cancer she had. Interestingly, she also learned how others were coping with uncomfortable side effects caused by the treatment. The coping methods she had learned had not been suggested or mentioned by members of her cancer-care team. When you look at an online community, consider whether the discussions are relevant to you and your experiences.
Is there a medical professional moderating or facilitating the discussions? Some online communities are similar to traditional in-person support groups and a few have medical professionals available. But most online communities do not have an expert available to review the medical information shared. If someone needs more support than the online community can provide, there is usually no trained professional available to offer that support. This is what makes some oncologists worry about online communities. People may receive the wrong information or may share too much personal information. When you look at the information shared in the group, ask yourself, “Is this information reliable and trustworthy?” If you don’t know the answer, ask your doctor.
Finding the right community for you may require effort and some research. There are no matching services for online cancer communities, so you may want to start by asking the advice of the health-care team as well as other patients or friends. Another approach is to begin by joining a community that is curated by professionals, providing a layer of supervision that keeps the conversations safe and supportive. One example is the Cancer Survivors Network, which is operated by the American Cancer Society, where members create a short profile and find others with similar stories with whom they can connect and share information about treatments. Another is the privately funded Smart Patients, which provides information and support from peers in a shared space that is monitored by a team of health-care professionals.