“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 of us, finding our online community has made a significant difference to how we cope with our illnesses. From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our online community can make all the difference.
Your online community can be your eyes and ears, helping you find something you may have missed or not known about. Isabel Jordan, the mother of a son with a rare disease, turned to her online community to help find a diagnosis for her son. “Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”, she says. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”. Katherine Leon, an SCAD (spontaneous coronary artery dissection) patient, leveraged the power of her online community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic.
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. You can also view my list of patient advocates on Twitter and add your own name to this list if you wish.
(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. Christina Lizaso, a moderator of the #gyncsm Twitter chat, has created several public lists worth subscribing to. See also this comprehensive list of patient chat community members created by Team Intake.Me.
(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. Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”
(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, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”
(5) Join Facebook, Google+ and LinkedIn Groups
On Facebook, Google+ and LinkedIn you can connect with other patients and join groups related to your disease or condition. Many organizations have a Facebook and LinkedIn presence and by following their pages you can keep informed of their activities and find other patients to connect with.
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? “Patients and caregivers seeking to join an online support community should ensure that they feel comfortable browsing a new online group before posting,” according to John Novack, Communications Director for Inspire, a healthcare social network with more than one million registered members. “Be an active lurker in a new group,” he advises, “and if possible, search for the topics most discussed there, because that will give you a sense of the overall focus of that community.” Jo Taylor agrees: “Watch and lurk (i.e. you don’t have to contribute – just read what is said) or join in. It’s up to you,” she says. “Don’t feel pressured to talk, but also don’t feel that you would say anything wrong. It’s a friendly place. Join in and meet others.” You might even find these online connections become friends offline too. “I have met people from all over the world,” says Jo, “but some are in my own town and I see them regularly. Whether you want online connections or face to face, both can happen due to the power of social media.”
7 Ways to Nurture Your Community
If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.
(1) Grow Your Community
A community is grown over time, not built overnight. I reached out to Julia, also a moderator of #BCCWW, to ask about her experience of growing a Twitter chat. She explained that the community will evolve by trial and error, “but it’s important to know what it is you are aiming to achieve and why. If you can get that clear”, she says, “It will follow from there”.
Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that is key to building a successful online community. As Erin Gilmer, founder of The Research Loop, points out, 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. “Even if it’s just two of you,” she remarks, “it’s still a community.”
However, if 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 need. Ask questions to better understand their issues and concerns. Invite researchers, physicians and other healthcare professionals to answer questions for your community through Facebook, LinkedIn, 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.” 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. “People seek community online to connect with other people”, says Colleen Young, Director of Community, Mayo Clinic Connect at Mayo Clinic. “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 relationship among members.
(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.
Bonus Tip: Broaden Your Reach
If your goal in creating a community online is to influence policy or improve communication with a wider healthcare audience, you will need to broaden your reach to create impact. “Patient advocates who lead successful online groups and chats have to establish credibility with all stakeholders in a particular therapeutic area, if the advocates want to broaden beyond establishing groups of only patients,” says John Novack. “Some Twitter chat communities like #BCSM, #LCSM and #GYNCSM are powerful”, he notes, “because caregivers, clinicians, and technology leaders are regularly involved.”
Building a community is an ongoing process; it requires an investment of time, and according to Annette McKinnon, “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,” says Andrew Spong, Lead, Health Equals. “The truth may be that communities are less cohesive than they appear,” Spong reflects, “but they are still the best tools we have to create bonds with others of like minds and experience.”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.