Building Online Patient Support Communities Brings Benefits, Risks

Online communities for patients with cancer and other serious illnesses provide emotional support and vital information.

Online cancer communities allow groups of people with expressed interest in cancer to communicate using a website, instant messaging, or email.

Forming online communities generates several patient benefits, according to a recent research article in Journal of Oncology Practice.

"Online communities can provide a measure of emotional support that may be comforting to patients and caregivers. Connecting with someone who has undergone a similar experience can be helpful by providing a personal perspective in addition to valuable information," the researchers wrote.

They found additional benefits included connecting individuals with rare diseases to patients who share the diagnosis, low or no cost to patients for the community platform, and privacy and anonymity protection.

Building and maintaining online communities includes planning, platform selection, proactive management of user posts, and caregiver engagement.

Fostering online communities
 

There are essential ingredients to grow an online community for patients, Lidia Schapira, MD, the corresponding author for the Journal of Oncology Practice research, told HealthLeaders this week.

"Important steps in launching an online community include defining its goals and deciding which platform on which to host it. Since the initial weeks and months help establish the culture and norms for the community, proactive management during this time is especially important. It is also important to involve and acknowledge needs of caregivers and to anticipate the need for revisions as the community evolves," she said.

With a cultural foundation in place, an online community can offer different levels of communication:

• Individual users post questions, answer questions, and create content in a shared space
   
• Users have the option to lurk—read postings in the community without communicating
   
• Multiple users can influence content

There are several approaches to maintaining an online community, Schapira said.

"Important ingredients for maintaining an online community include: community managers, a regular influx of new members, and mechanisms for members to provide feedback on how to improve the community. What we learned from our interviews and research is that, in addition to motivation, it takes a concerted and disciplined effort to maintain a community," she said.

Online community pitfalls
 

There are several risks associated with online communities.

"Oncologists' most pressing concern is the exposure to misinformation. Scientific information may be misunderstood, and patients often report that comments they read on the Web are not only unhelpful but also scientifically flawed," Schapira and her coauthor wrote.

Online communities can pose social risks, they wrote.

"Other risks include the possibility of becoming so addicted to or reliant on Internet-based relationships as to become more socially isolated. A possible risk may also come from oversharing or sharing personal details that may compromise the patient’s own privacy and that of family members and members of the care team."

The helper therapy principle also bears risk in online communities. The principle applies when patients provide support to others who are facing similar circumstances.

"Although some have suggested that serving this role can be therapeutic, there is concern that occupying the role of the helper could also limit patients from being able to express their needs openly, thereby preventing them from attaining full benefit of the support group," the researchers wrote.

Clinical effect unclear
 

The impact of online communities on clinical outcomes is unknown, Schapira said.

"Our discovery work taught us that we need novel research methods to analyze how and if participating in an online community impacts measurable health outcomes—these could be measures of self-efficacy, coping, managing symptoms of illness or side-effects of cancer therapy," she said.

Caregivers are another area requiring more online community research, Schapira said.

"There is also a need to study the impact on family caregivers' ability to handle their increasingly important roles in providing support and advice and managing complex decision-making."