Tapping the Resources of Online Patient Communities

Brian Loew

@teaminspire

Without question, one of the most important benefits of healthcare social media engagement for oncology practitioners is the opportunity to gain broader insights into how patients and their caregivers are coping with their cancer, as well as a better understanding of the needs of survivors after their treatment ends.

“Patients are much more likely to share details of their disease with other patients who are going through it as well,” noted Brian Loew, cofounder and chief executive officer of Inspire, a Princeton, New Jersey—based organization promoting online patient communities (OPCs).

When Inspire was launched in 2005, each of its founders had family members with medical conditions, and they were looking to create a supportive, online space for both patients and caregivers. “We started very small,” he Loew explained. “Our first partner was the Children’s Inn at the National Institutes of Health, followed by WomenHeart.”

Inspire has since grown to 106 such partnerships. In addition to oncology, Inspire moderates online communities for rare diseases and genetic conditions, infertility, and fibromyalgia (Box).

“Oncology is actually Inspire’s strongest area,” Loew noted. “I think the reason that cancer seems to create such strong communities is that there is a huge role for the patient and the caregiver.”

Inspire

Inspire accelerates medical research through the creation and operation of safe, moderated, peer-to-peer online communities, organized by medical condition for patients and caregivers. Inspire currently partners with 106 nonprofit national patient advocacy organizations. Its communities allow patients and caregivers to connect with others who share their health concerns by creating personal profiles, participating in discussions, and blogging:

• 400,000 members—more than 80,000 of whom are affected by cancer.
• Of the 5 million posts, >1.6 million were in Inspire’s cancer support groups.
• Inspire currently hosts 25 cancer-related groups, the largest of which is Lung Cancer Survivors with more than 26,000 members. The Ovarian Cancer National Alliance support community has nearly 16,000 members.

For more information on all of Inspire’s oncology communities, visit www.inspire.com.

Intensity also is a factor, he continued. “If you have cancer, or you’re a caregiver for a cancer patient, you want information; you want connections; you want support, and you need it now.” OPCs provide that.

The like-mindedness of the OPC is another important element, Loew explained, because patients and caregivers have a lot of common experiences to share. “When you describe what you’re going through, other members of the community get it right away.”

He added that for a number of Inspire’s communities, at least half of the members are caregivers. For example in the prostate cancer group, 50% of members are women.

“The caregivers are often as engaged, or even more so, as the patients themselves. The caregivers play a huge, huge role.”

Engaging Providers

In the Inspire communities, Loew estimated that approximately 10% of the members are medical professionals. “A lot of patients really appreciate the participation of nurses,” he added. When a friend of his was diagnosed with colorectal cancer and needed an ostomy, his nurse recommended the online community for ostomy moderated by Inspire.

Practitioners can join the groups or simply look at what patients and caregivers are discussing, Loew continued, as a way to more deeply understand what’s going through patients’ minds. When nurses are assigned a patient with a tumor type they may not have encountered before, for example, they can “very quickly learn about what patients with that particular cancer are experiencing by participating in the community.”

“In our lung cancer community, discussions are organized by stage, and that was actually at the request of patients,” Loew explained. “If I was an oncology nurse, and I had a patient who was stage II or stage III, and I wanted to know about the transitions that they are experiencing, this would be a great way to figure that out,” he continued.

Another way nurses can use social media to more fully understand cancer patient and caregiver experiences is through the many oncology-related healthcare chats regularly hosted on Twitter. The trailblazer in this area is the Breast Cancer Social Media (#BCSM) chat, which takes place Monday nights at 9 pm EST. There are also oncology-based chats in several other areas, including lung cancer (#LCSM) and gynecologic cancers (#GYNCSM).

#BCSM chats are moderated by its three founding co-chairs: Deanna Attai, MD, surgeon and president of the Center for Breast Care in Burbank, California; Alicia Staley, a three-time breast cancer survivor and executive director of the Boston, Massachusetts—based nonprofit Staley Foundation dedicated to enriching the lives of people touched by cancer; and Jody Schoger, a cancer survivor, advocate, author, and blogger for WomenWithCancer and the MD Anderson Cancer Center patient blog, Cancerwise.

#BCSM co-chairs Deanna Attai, MD (@DrAttai), Alicia Staley (@stales), and Jody Schoge(@jodyms).

For more information and tips on participating in the breast cancer social media chat, visit http://www.bcsmcommunity.org/bcsm-chat/ and follow @BCSM chat.

The first #BCSM chat took place Independence Day 2011, moderated by Schoger and Staley who had identified a need for a central place for the many breast cancer conversations happening on Twitter. At the time, there were several healthcare social media chats but none specifically focused on challenges facing patients with breast cancer and their families. Attai joined the team shortly thereafter.

“As clinicians, we just have to recognize that there really is a whole lot of chatter going on outside of our offices, and we need to pay that a little more respect,” said Attai. She added that during the office visit, patients may be afraid to ask questions or feel that there isn’t enough time. “I am always struck by how many women just don’t feel comfortable mentioning basic side effects or complaints to their doctors.”

Looking through the prism of a breast cancer survivor, Staley attributed the excellent care and treatment she has received from her oncology nurse to enriching her own contributions to the group: “I have had the same nurse at Tufts Medical Center where I have been treated since 2004, and what I have learned from her has just been monumental to how I approach my care.”

“She was the one who really helped me to get my voice in terms of advocacy engagement,” Staley continued. “I feel very fortunate and feel a responsibility to help other patients who might not necessarily have that kind of relationship with their healthcare team.”

The #BCSM co-chairs live in three different time zones, but they “meet” via conference call regularly to plan topics for the weekly chats. Chats scheduled for the remainder of this year include ones focused on clinical trials, holiday coping, and cancer isolation. Occasionally, it’s “Open Mike Night” at #BCSM, where participants can bring up any topic they would like to discuss with the group.

One of the most memorable #BCSM chats turned out to be a tribute to two especially active and eloquent members of the #BCSM community who had passed away. The co-chairs said the evening turned into a virtual memorial to the two—an incredible outpouring from people who had never met each other, which they said was inspirational and reaffirming to watch unfold.

That event also served to shine a muchneeded light on the need for more attention to metastatic disease, said Attai. “Metastatic disease does not get the coverage that it should,” Staley continued, adding that sometimes in the attention surrounding breast cancer awareness, “this very serious aspect of this disease can get overlooked.”

#BCSM differs in one important way from Twitter, insofar as Twitter—a great vehicle for exchanging good content—is not in itself a community which is built over time through online relationships, the group noted.

Inspire’s Loew agrees: “Social media is a really broad phrase. Communities are different from Twitter or Facebook because of the likemindedness."

And this is true not only in Inspire’s cancer groups, he added. “You see this very strongly in our infertility community and our preemie community.” Patients and caregivers really appreciate being able to chat with others who are going through exactly what they are experiencing.”

“Lurk, Listen, Learn” . . .

The moderators of #BCSM advise those new to the group not to feel pressure to post comments or questions. It is absolutely fine to simply monitor the chat (“lurk”), listen, and learn. The chats can move pretty quickly, and they each work to keep the discussions on track and move the evening’s theme forward in a positive way.

For the oncology nurse, these chats for breast, as well as other cancers, provide an opportunity to dig deeper into their patients’ experiences.

“There is just a whole other level of what’s going on with patients,” Attai stressed. “As much as we think we have a really intimate knowledge of how they are coping, and what’s going on with them, we really don’t. These chats have really opened up my eyes,” she continued, noting that they inspire her to probe deeper and sometimes change the direction of her questions to areas she might not have thought about.

For patients, these exchanges can provide reassurance that the treatment effects they may be experiencing at a particular stage of their cancer or as a survivor are validated by learning that others are going through it as well. “A lot of times all patients want to hear is, ‘yes, this is miserable, but it is normal.’”

Finally, the discussions can provide the impetus for a patient reluctant to contact their doctor or nurse, “to just pick up the phone and ask it,” said Attai. It reaffirms, she continued, “that there are no stupid or silly questions.”

. . . And Join In

Although practitioners and others are welcome to “lurk” at OPCs, the perspectives of healthcare professionals are ones that both moderators and participants really value. #BCSM, for example, has medical oncologists who are very active, and others who join when they can, as well as breast surgeons, radiation oncologists, research scientists, social workers, and clinical psychologists. “We really have all the components of a multidisciplinary team,” Attai noted.

“Our group is always hungry for information,” Attai concluded. She admitted that after a hectic day at the clinic, she might just want to come home on a Monday night and sit and watch a basketball game. Yet, whatever time zone they’re in, each moderator winds up being invigorated by the exchanges.

“It just gets you going, because there is so much energy generated from these groups.”