5 reasons to meet your patients in online support communities

Patients and caregivers are looking online to find connections with others facing the same challenges. You should be there, then, to help patients make those connections.

With or without you, patients and caregivers—your customers and prospective customers—are on the Web for information and support. Outside the health realm, Angie's List, Yelp, TripAdvisor and services like them are popular because of the peer-to-peer connections. There are more online options for people to research diseases and conditions, and more peer support platforms.

Here are five reasons that patient networks should be an integral part of your services:

• Online communities show you what topics your patients and caregivers care most about. They create another channel from which you can get feedback about your organization, through formal or informal surveying. You can post your formal patient satisfaction survey tools and post questions for rapid feedback on particular topics. Also observing trends in topics and posts can provide a unique snapshot of the needs of the community and allow your team to provide more education and support easily.
• Online communities create a 24/7 resource, and can serve as a form of support in off-hours. Organizations that create patient support networks are rounding out their support services. At my company, Inspire, which builds and manages support networks for patients and caregivers, scores of members write about the immense value in being able to just be heard by a compassionate peer, particularly when there are no in-person services available.
• The networks give you opportunities to engage and guide detailed conversations about such topics as clinical trials and research. You can provide stories and news about research that is happening and put a human face to the process that can often be scary for many patients.
• The groups serve as a backstop for your information resource and programs. For example, posting about services provided, special seminars or support groups meetings can illustrate the dynamic programs your organization provides on a regular basis.
• You can develop champion volunteers and benefactors of your organization through patient networks. Some of your biggest advocates can take lead roles as moderators and informal subject matter experts. An active online community will encourage new leaders to come forward.

Most of our members find online support communities to join through online searching and/or by word of mouth. We see indications that physicians and other medical professionals are "prescribing" online communities to help patients cope with their disease.

Well-known patient advocate "ePatient Dave" deBronkart said having access to an online cancer support group helped him when he was undergoing treatment several years ago for Stage IV, Grade 4 renal cell carcinoma. The emotional support and practical advice from his kidney cancer group, he said, empowered him to face the grueling treatments. "There's immense value," deBronkart said, "to discovering that you're not alone."

Danielle Leach is director of partnerships at Inspire. Based in Princeton, N.J., Inspire creates and manages online patient support communities, many in partnership with national patient advocacy organizations. Among the online support communities are the Georgetown University Hospital NICU Support Community, and Special Connections, a support group of Cincinnati Children's Hospital Medical Center.