12 Keys to Finding, Growing, and Nurturing an Online Patient Community
“If you want to go fast, go alone; if you want to go far, go together” — African Proverb
Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation.
The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected to others who are going through the same experiences.
Online communities may be virtual, but they are no less real in terms of support and influence. We see just how much people are willing to reach out to others to provide advice and support — even to strangers online.
At the heart of a high-functioning social network is a strong sense of community. Social media has accelerated the growth of patient and caregiver communities, allowing people to come together around shared experiences, regardless of time or place.
For many patients, finding an online community has made a significant difference to how they cope with illnesses. From helping to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to an online community can make all the difference.
Five Ways to Find Your Online Community
Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are five practical ways to get started.
(1) Find People to Follow on Twitter
Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow.
(2) Build Twitter Lists
Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others.
(3) Follow Relevant Conversations
The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example, #cancer. Hashtags are a useful way to search for health-related conversations.
(4) Join Twitter Chats
A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people.
(5) Join Facebook Groups
On Facebook you can connect with other patients and join groups related to your disease or condition. When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values?
If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.
7 Ways to Nurture Your Community
(1) Grow Your Community
A community is grown over time, not built overnight. Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that are key to building a successful online community. Sometimes it may seem like there are only two people in a Twitter chat, but it turns out to be more because many patients “lurk” but don’t feel comfortable tweeting openly.
That being said, f your community is new you will want to build up your initial numbers to get started. Go through your e-mail contacts list and invite relevant people to join your community. Do the same with your followers on Twitter, Facebook, LinkedIn and any other social networks you are active on. Ask existing members to invite their friends. When choosing which social network to communicate on, go for the platform your audience is most familiar and comfortable with.
(2) Provide Valuable Information
Building a sustainable community requires you to provide value and be responsive to the needs of that community. Think about how your group will become the go-to information resource for your members. This means you will need to create and share information on a consistent basis.
Don’t automatically assume you know what the group needs. Ask questions to better understand their issues and concerns. Invite researchers, physicians, and other healthcare professionals to answer questions for your community through Facebook, Linked In, Twitter and blogs.
(3) Connect Members to Each Other
As humans, we have an innate desire to feel connected with others who are going through the same experiences we are.
Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”
If you want to build a thriving community, focus on the people, help them connect, and get them talking. Introduce members to each other and connect like-minded people. Think about how you might create common bonds, cultivate a sense of belonging, and build strong relationships among members. In the future, new online tools will come and go, but our innate desire to reach out, to connect, and to help one another will remain.
(4) Listen: Don’t Judge
Do listen to your community and try to address their legitimate concerns. You may not agree with everyone in your group, but try to understand where they are coming from. Determine whether negative comments have any merit. This doesn’t mean you have to engage with trolls or unwarranted criticism. Sometimes people just want to cause drama or discord, so it’s important to put clear policies in place which protect you and your community from abuse.
(5) Reach Out and Support the Community
Collaboration, not control is at the heart of a successful community. Reach out to your members and find out how you can help and support them. Find answers to their questions, retweet, favorite, and share their content with others. Equally, don’t try to do everything yourself. Co-create content with your members and ask for help when you need answers and support too.
(6) Nurture Your Community
When you nurture relationships in a human way, they flourish like friendships in our personal lives. Take time each day to interact personally by welcoming new followers, answering questions, acknowledging comments, addressing members by their name, and thanking people for contributing to the conversation. Also, take time to acknowledge birthdays, milestones, and other achievements.
(7) Be Open, Honest, and Transparent
Be open and transparent in all your online activities. Without honesty, you have no trust or credibility. Model the behavior you wish to see in the community. Be willing to self-disclose and encourage self-disclosure in others by creating a safe space for members that welcomes open and honest discussions.
To Sum Up
Building a community is an ongoing process; it requires an investment of time and a core group of committed and persistent people. It’s about building trust, connecting people, and providing valuable information and support over the long term.
Your community is always about something greater than yourself. The best communities will provide a safe space to support each other, mentor, and help each other grow.
Whether you are joining a group for the first time or starting your own online community, consider how you might contribute your unique experience and expertise to make the group a more connected and inclusive space.
Finally, it’s important to have realistic expectations. A community requires balance, and equanimity; a generosity of spirit; an expectation of complexity; a tolerance of frustration; a desire to listen, and to give. The truth may be that communities are less cohesive than they appear but they are still the best tools we have to create bonds with others of like minds and experience.