In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.
This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.
What is Digital Health Literacy?
Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.
If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.
When you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.
On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.
While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.
Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you. It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.
Find People To Follow On Twitter
Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.
How To Find Health Related Conversations On Twitter
(1) Advanced Search
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 – for example “diabetes”. You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.
A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.
(3) Twitter Chat
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. 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.
When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.
(4) Conference Live-Tweeting
Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.
These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.
A Rising Tide
The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?
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. 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.