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Leveraging Social Media for Patient Advocacy #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 


Just Start

 

 

 

 


Think About When You Were Sick

 

 

 

 


Full Chat

 

12 Keys to Finding, Growing, and Nurturing Your Online 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 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.”

Related Reading

#PatientChat transcript on online communities

Notable News

Knowledge is power, but staying on top of and researching all the latest headlines can be a time-consuming and daunting process. That’s why we’re doing it for you. That’s right. We’ll keep an eye on the most interesting and newsworthy developments of the past month or so and then we’ll summarize them for you here. We’ll even provide you with links to the more detailed articles at the end of each summary. The best part? We’re starting right now.

There’s a lot of buzz about immunotherapy and rightly so. This month an article on time.com featured a successful immunotherapy test trial in which a young leukemia patient’s own immune cells were used to fight her cancer. The genetically modified immune cells are called chimeric antigen receptor (CAR) T cells and with one application they can be used to train the body to fight the cancer cells, hopefully, indefinitely. The modified cells are basically drugs living inside the body. That means patients won’t need to take regular doses of medications or be subject to other, sometimes unpleasant, treatments. There is a huge push for the Food and Drug Administration to move the therapy beyond the testing phase so more people can benefit. So far, the results are promising. Two men underwent the CAR T therapy in 2010 and both remain in remission today. Researchers are proceeding with caution though. The CAR T cells are individualized, therefore very expensive, and so far the process only works on some types of blood cancers There are also some pretty intense side effects. When the modified cells enter the body and start killing off the cancer cells the immune system response is acute and can include things like high fever, difficulty breathing, and kidney failure. All told, the latest developments in immunotherapy are worth keeping an eye on. Read more here. You can also learn more about it here. And even more, including a bit about the history of the research and the men behind the research here.

An unexpected hurdle has emerged in cancer research: not enough patients. Hard to believe, but as reported by nytimes.com earlier this month, there are more drugs and clinical trials than there are patients to test them on. Here’s why. Inspired by the latest developments in the aforementioned immunotherapy, companies are in overdrive and have created a surge in trials for new drugs that use the body’s own immune system to combat cancer. These drugs have the potential to yield a huge profit should the FDA give the stamp of approval. None of the companies want to be left out of the earnings so they are all trying to develop their own version of drugs that treat similar cancers. That alone is enough to spread thin the eligible patients. Factor in the specificity of some of the trials and the patient pool decreases even more. In addition, the rapid increase in trials have made some of the major medical facilities wary and they have dialed back their participation. You can find more details here.

A routine blood test may soon be the best method of early detection. Researchers in Japan have developed a method that uses a single drop of blood to test for 13 cancers. The test is relatively inexpensive, would be done as part of a comprehensive medical exam, and use a molecular substance called MicroRNA to detect the cancers in early stages. Clinical trials are underway as of earlier this month. This promising development was reported at pressherald.com and more details can be found here.

Stay tuned. In the months to come, we’ll help keep you informed which will help keep you empowered.

Patient Advocacy: Ten Tactics for Mastering Social Media Success

Social media extends beyond the world of Facebook and Twitter. It encompasses blogs and other newer social platforms such as Instagram, Snapchat and Pinterest. If you want to raise awareness of your cause, amplify your patient advocacy activities, and create change where it’s needed most, social media is an important channel to share your message with the world.

Here are ten tactics you can use to master social media, make your cause better known, and grow your online influence.

1. Define Your Purpose

The success of any strategy, whether it happens on or off line, starts with defining a clear purpose for your activities. Ask yourself what you want to achieve with social media and then set specific and actionable goals to achieve it. Goals are the forerunner to success. You need big-picture long-term goals and smaller weekly or monthly goals that allow you to stay on track. For a goal to become a reality it needs to be specific, measurable, attainable, and realistic, as well as time specific. These are often called SMART goals.

Let’s take as an example, a goal to grow your Twitter followers, the following are the steps you would take to make this goal SMART.

  • Specific. The more specific you can be in defining your goals, the easier it will be to clearly see what it is you are trying to achieve.
  • Measurable. Give your goal a number. For example you could state you want to double the number of your existing Twitter followers or grow your following by 10%.
  • Attainable. Is your goal attainable? Can you realistically double the number of your Twitter followers? Or should you aim for a smaller increase to start with?
  • Relevant. Does this goal support your organization’s (or your own personal) objectives, vision, or values?
  • Time Specific. Give your goal a deadline, for example, “I will double my Twitter follower numbers by 10% in three months.”

2. Perfect Your Social Profiles

As I’ve written here before, patient advocates who are looking to change hearts and minds should consider the image they present online. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?  Review each of your existing social profiles with the following questions in mind.

  1. Do you need to update your bio with new information? Is there a project you are currently working on? Or a campaign you are part of?  Add this information to your biographical details.
  2. Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. You also have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message.

3. Focus on Being The Expert One Channel At A Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one. Look back on the past six months and ask yourself what you were good at doing. What worked well for you? Then do more of the same. Aim to become known as the go-to expert on one channel before you move on to the next one.

4. Create Share-Worthy Content

If you want people to share your content, you need to give them something worth sharing. The New York Times did a fascinating study a few years ago on the psychology of social sharing. It revealed that people want to connect to other like-minded people and they want to support issues they care about. Above all they want to share content that will be useful for those others in their network. Create content that your audience will want to share because they believe it will be of value or interest to others. Don’t just add to the online chatter. Before you post something, stop and ask yourself would this pass the re-share test? Why would I want to click on this information? Would I want to share it with my friends/family?

5. Create More Visual Content

In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. There are many tools out there which help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Make It Easy For People To Share Your Content

By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. Make it easy for readers to share your posts by incorporating share buttons for the main social media sites on your blog. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.  Use a tool like Click to Tweet which generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares and highlight relevant quotes, stats, and key takeaways.

7. Leverage Hashtags

A hashtag (#) is a popular way of creating and monitoring a conversation on social media. While most often identified with Twitter, posts can also be tagged on Instagram, Pinterest, Google Plus, and Facebook. Don’t over-use hashtags on Twitter. Research shows that tweets with more than two hashtags actually see a drop in engagement. Check the Healthcare Hashtag Project for relevant healthcare hashtags.

8. Maintain a Consistent Content Creation and Promotion Schedule

Social media marketing is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing. Set aside one day each month to map out upcoming events, holidays, and so on, which you would like to write or post about. Then use a simple excel spread sheet to create your content calendar. Do the same thing with another spread sheet for social media postings.

One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics to see the most popular posts you’ve written. Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck. By re-purposing content you have already written, you can extend and breathe new life into your current and past content. Check out these ten creative ways to repurpose your content for more ideas.

9. Optimize Your Engagement

To optimize your social media engagement, it’s useful to know the best times to post your updates so they reach your audience when they are online. If you search for optimum posting times, you will find many guides online. They vary in their advice, so it’s always a good idea to do your own testing to determine the optimum times for your own particular audience. Once you’ve determined your optimum posting times, use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often.

10. Track and Measure Your Progress

How do you know if all the time you’re investing in social media marketing is paying off? You don’t know unless you put a system in place to measure and analyse your progress. Most of the main social platforms has their own analytics built in. Regularly tracking and measuring your activities on social media helps you see what is working (or not).

Using these ten tactics will help you focus on your goals more clearly, promote your key messages better, and measure your activities more effectively. Don’t expect all of these tactics to work right away. Social media is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, remember the goal is not to be good at social media for its own sake; rather the goal is to be good at patient advocacy because of social media. Social media are powerful advocacy tools, but they are just tools. It’s within how you master those tools that the real power lies.

The Advocate’s Guide to Reporting Live from Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. I believe it is part of our role as advocates to make these learnings accessible to all and live-reporting is a powerful way to do this. Furthermore as attendees, the experience of live-tweeting can enhance our own personal learning.  It requires us to listen more carefully and focus more sharply on the key details of a talk so we can better summarize what the speakers are saying in 140 characters.

Quite often, multiple vibrant discussions happen on Twitter as questions or insights are shared from other conference attendees and from those listening in online, thereby creating a parallel virtual meeting. Similarly, if a meeting has parallel sessions, live-tweeting enables conference attendees to listen in on multiple talks simultaneously. This learning can be further consolidated with an archive of tweets on which to reflect back after the event.

Live reporting tools include live-streaming using Facebook Live, Instagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.  Because of its ability to give people who aren’t at an event a sense of what is unfolding as it happens, live-tweeting (sending real-time updates via Twitter) is a popular way to capture the immediacy and energy of an event.

Whether organizing an event, taking part in person, or tuning in online via live-streaming, the following guidelines will help you better prepare to report live from your next conference or event.

Before The Event: Get Organized

1.Create a Custom Hashtag

If you are organizing the event, create a custom hashtag (#) and let people know in advance what it will be. Keep the following tips in mind when choosing a hashtag.

  • Make it short. Remember people only have 140 characters to tweet with and you want to leave some room for re-tweets.
  • Make it intuitive and relatable to your event but not so generic that it’s confused with something else.
  • Make it easy to remember and type for delegates. Many will be tweeting from a smart phone or tablet.
  • Make sure it isn’t already in use. You don’t want to duplicate an existing hashtag which may result in two simultaneous but very different conversations colliding on Twitter. Do a Twitter search to find out.
  • Monitor your hashtag on a regular basis to see if someone else is using it for something unrelated.
  • Register your hashtag with Symplur’s Healthcare Hashtag Project. Doing so will also allow you to access analytics after the event.

2. Create Twitter Lists of Speakers and Attendees

Creating lists on Twitter of those who are speaking and attending the event is a super way to keep track of their tweets. These lists will help you prepare in advance by making sure you know the correct names, affiliations and Twitter handles of key speakers and attendees. It is also a useful way of finding other like-minded people attending the event whom you can network with.

3. Set up Saved Searches

Use a Twitter client tool to set up a saved search of the conference hashtag and @usernames. A tool like TweetDeck or HootSuite will allow you to have multiple columns open for different Twitter searches, helping you to keep track of several sessions at once.

4. Prepare Some Tweets in Advance

Things move fast on Twitter, particularly when you are live-tweeting.  Having some pre-prepared tweets on hand helps you stay organized and feel less overwhelmed in the moment.  This is particularly helpful if you are including photos or graphics with your tweets, since image editing can be time consuming.

During The Event

5. Tag Your Tweets with the Event Hashtag

Once you start tweeting live, make sure to use the designated event hashtag.  Let your followers know the meaning of the hashtag and why you are tweeting from the conference.  Provide a link to the event page so that people have some context to what you’re tweeting about. It is good practice to let your followers know in advance that you are live tweeting so they can mute the hashtag if they aren’t interested in those tweets.

If you are organizing the event, keep an eye on unofficial hashtags. Sometimes, people tweet using hashtags that make sense to them instead of using the official hashtag. This shouldn’t be an issue if you have chosen a simple, intuitive hashtag and promoted it in advance, but it is still a good idea to an eye out for rogue hashtags and direct the users to the official one.

6. Focus on Value

The objective of live-reporting is to provide value to others, so avoid tweeting sound-bites that won’t make sense to online listeners. Be selective about the quotes or insights you choose to tweet and only post high-quality photos and videos that your followers will find interesting. No one wants to see a blurry photo of a speaker or a slide.

Strive for originality and context and make it relatable to your Twitter followers.  Tweet links to websites, studies, or other information which will enhance understanding of the topic. It’s fine to highlight your own expertise, but don’t spam. Retweet attendees and speakers who represent your mission and core values. Search for questions being asked using the event hashtag which you can answer.

7. Don’t “Binge Tweet”

Be selective, share key points only and avoid flooding your timeline with tweets. Don’t mindlessly re-tweet what everyone else is already tweeting, unless you can add a unique perspective. When live-Tweeting, one Tweet every five minutes is a good rule of thumb.

8. Give Correct Attribution

Be sure to attribute quotes to the speaker who made them, by using quotation marks. Whenever you cite a speaker, add their Twitter handle and affiliation if known (this is where those pre-prepared Twitter lists come in useful). Separate your own comments/viewpoints from the speaker’s own words.

9. Encourage Engagement

Don’t tweet in a vacuum; engage with fellow live tweeters and contribute to a larger conversation. Involve online listeners by asking questions; e.g. “Speaker X says doctors need to be more empathetic – do you agree/what do you think about this?”

10. Be Social

Don’t restrict yourself to tweeting behind a screen; take the opportunity to network and meet new people face-to-face too. Live-tweeting is a great way to meet like-minded people, so use it to organize “tweetups” at coffee and lunch breaks during the event to further the connection.

After The Event

11. Archive Your Report

After the event has finished, you can still add value by using a tool like Storify and/or Twitter Moments to archive tweets.  You could also summarise the event in a follow-up blog, embedding selected tweets to illustrate your points.

Twitter Abbreviations:

# = hashtag

@ = a way to address a Twitter user

RT = retweet, share something already tweeted

MT=modified tweet, indicates you have modified an original tweet

HT = hat tip, acknowledge or thank a source

DM = direct message

CX = correction

Live reporting from conferences and events is an important part of our advocacy work. It expands the reach of information, research, and data beyond the physical limitations of a conference or event. It also offers an opportunity to highlight your own influence and expertise.

Encourage other advocates to join you in reporting live because the more multiplicity of voices we can bring to an event, the more we can amplify our voices and be heard. As with medicine, there is both an art and science to live reporting. Follow the tips outlined in this article to take your live reporting to the next level.

Don’t Be An Egg Head! Ten Twitter Tips for Patient Advocates

Last month Twitter announced it is now possible to filter out accounts with the default (egg) profile image, so that they don’t appear in your notifications. While this change is part of the company’s efforts to deal with abuse on the platform, it is also a timely reminder to those Twitter users who still have accounts without a personal picture to add one.   It is still surprising to me the number of new (and not-so new) Twitter users who are tweeting from an account with no clearly identifiable name, bio, or profile picture.

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. A study published by researchers from Microsoft and Carnegie Mellon University, “Tweeting Is Believing? Understanding Microblog Credibility Perceptions,”  analyzed how users assess Twitter credibility. The study found that users represented by the default Twitter icon, or a cartoon avatar, are perceived as significantly less credible than users with a personal photo.

Patient advocates who are looking to change hearts and minds should consider the image they present online. What will people’s first impression be of you? What might make them decide to follow you? What kind of content should you tweet to engage your followers?  Whether you are a Twitter newbie, or you have been on Twitter for a while, these ten tips will help you develop your professional identity on social media.

1. Perfect Your Profile

The first and most fundamental thing to understand about Twitter is that it is a conversation. Would you approach someone at an event and not introduce yourself first? Would you keep your face hidden from view while you hold a conversation? And yet this is precisely what some users do when they set up their Twitter accounts. Many Twitter users will not follow accounts without a profile picture on the assumption it is a fake account, and now with these new changes it will be easier than ever to weed out these accounts.

Let’s start with your avatar. An avatar is something used to represent you in an online environment and on Twitter it is the small thumbnail picture that appears alongside your tweets in the feed.  Since the thumbnail is so small (400 x 400 pixels), choose an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo.

You also have an opportunity to personalize your profile by uploading a custom header image, similar to a Facebook cover photo.  Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message.

2. Craft Your Bio

Trying to capture your passion and experience in Twitter’s 160 character limit for a bio is a challenge.  You won’t be able to express all you want to say, so think of this as a snapshot of who you are and what you do.  How will you describe yourself to pique people’s interest to learn more about your work?  Which of your accomplishments will you highlight? Is there a project you are currently working on? Or a campaign you are part of?  Use campaign hashtags, and link to other relevant Twitter accounts to highlight your online community.

Bonus Tip: When writing your professional bio, be brief but authentic, and make your core expertise and experience immediately clear.

3. Find People to Follow

Begin by following your organization’s Twitter account. Twitter will then auto-suggest people who also follow this account for you. Next draw up a list of organizations and groups related to your area of interest. Go to their website and click on the Twitter follow button if they have one. When reading blogs written by other patients check to see if they have included their Twitter profile.

Follow healthcare professionals, researchers and patient advocates who are tweeting about issues related to your illness. 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 (words or phrases prefixed with a “#” sign).  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.

Bonus Tip: It’s a good idea to organize your followers into lists. You can create your own lists or subscribe to lists created by others. I use a tool called Listly to curate healthcare lists – you can view my epatient list here.

4. Engage Your Followers

The more people who follow you, the more you can amplify your content and increase your social shares.  As you attract followers to your account you will need to think about how you are going to keep them engaged over the long term.  How will you maintain trust and credibility and give people a compelling reason to keep following you? Take the time to acknowledge when a person follows you online or re-shares your content.  Keep your eyes open for those who retweet you often or share your blog.  Thank them sincerely for sharing your content. Show your followers you are interested in their tweets too by retweeting and favoriting their updates.

5. Share Interesting Content

If you want people to share your content, you need to give them something worth sharing. The New York Times did a fascinating study on the psychology of social sharing a few years ago. It showed that people want to connect to other like-minded people, they want to support issues they care about, and above all they want to share content that will be useful for those in their network. Create content that your audience will want to share because they believe it will be of value or interest to others. Don’t just add to the online chatter. Before you post something, stop and ask yourself would this pass the re-share test? Why would I want to click on this information? Would I want to share it with my friends/family?

6. Use Hashtags Wisely

A hashtag on Twitter is a very popular way of creating and monitoring a conversation around a particular topic and can be a great way to engage your followers. To create a hashtag, simply place # before a word.  Twitter’s own research into hashtags shows that there is significant advantage to using them. Individuals can see a marked increase in engagement simply by using hashtags. A word of warning though – when #you use #too #many #hashtags your #tweet looks like #spam. Don’t use more than 2 hashtags per tweet. Research shows that tweets with more than two hashtags actually see a drop in engagement.

7. Live Tweet

A great way to add value for your community is to live tweet from conferences and events. Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. You can follow along on Twitter using the conference hashtag and share your insights and key highlights with your followers who cannot be there.

Curate the tweets from the event using Storify – a tool which gathers social media updates and media from across the web to build a social story. You can also notify people that their tweets have been curated in the Storify – which is a great way to publicly recognise your followers and attract new followers.

Bonus Tip: If you’re new to Storify, check out my step-by-step guide to creating your first story.

8. Develop a Regular Posting Schedule

In order to stay in front of your audience’s eyes you need to post consistently. Create a social media calendar using a simple Excel spread sheet so you can map out in advance upcoming holidays and cause awareness days to tweet about. When you have created your calendar, you can use a Twitter scheduling tool, like HootSuite, Buffer or Tweetdeck to schedule your tweets in advance. The internet is global and if you want the spread of your content to reach further than your own backyard, you need to hit multiple time zones. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Bonus Tip: Follow this link to learn more about this tip and download a social media posting calendar.

9. Join a 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. In addition you will find past transcripts of chats on the website. This is also a useful resource to find Twitter users to follow.

Bonus Tip: It’s good Twitter etiquette to let your followers know your tweet volume is about to increase as you join the chat.

10. Have Fun!

If you’re new to Twitter you might be feeling a bit overwhelmed at all this advice. Remember you don’t have to do everything right away. Go slowly at first. Take one of these tips each week and put them into action.  Soon you’ll find you are becoming a Twitter pro, ready to teach others the tips and tricks you have perfected. Above all, have fun with Twitter. It’s a super place to network and learn, but it’s also a fun place to make new friends.

The Digital Sherpa Workshop Main Takeaways

Digital Sherpa WorkshopOn November 10, 2016, we hosted our first Digital Sherpa Workshop in partnership with Florida Cancer Specialists & Research Institute and Florida Gulf Coast University. A group of 5 cancer patients and 2 caregivers who expressed a desire to become more competent in Internet and social media skills met with 8 college students who have been specially trained as Internet “Sherpas” to offer them a workshop in these skills. The students offered help in basic skills and included the following:

  • Basic Internet skills (opening an email account, how to use Google search, filtering search results, creating/remembering passwords)
  • Basic Twitter skills (opening a Twitter account, how to tweet, how to build followers, how to add images, whom to follow, privacy protection, hashtags, tweetchats)
  • Basic Facebook skills (opening an account, privacy settings, how to post, Facebook etiquette)
  • Patient Communities such as Treatment Diaries, PatientsLikeMe, StupidCancer, HealthUnlocked, Cancer Support Community

“I love being able to put a smile on someone’s face who is going through so much!” – FGCU Student

Along with the learning basic Internet and social media skills, the patients and students shared a great sense of companionship and some even have plans to meet-up again in the future! One patient shared that she was grateful to be able to ask questions about her phone and social media without having to bug her children. It was so amazing and touching to see these two generations come together and have fun in each others company all the while learning valuable skills. The students learned they can make a tangible difference in someone’s life with the tech knowledge they already possess and the patients learned how to empower and educate themselves in their health via social media and the Internet. Both patients and students were so happy with the results of the workshop, they were asking when the next one would be. We are so excited and thankful the pilot Digital Sherpa Workshop was such a success and look forward to hosting workshops in the future!

Digital Sherpa Workshop

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

the-benefits-and-pitfalls-of-blogging-about-your-illnessYet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

 

 

Thanks to Social Media, Rare Progress on Rare Diseases

This post was written by Meredith Salisbury for Techonomy.com and was originally published on July, 26, 2016.

Rare DiseaseSolving any disease is hard, but solving rare disease is a special kind of torture. Take everything that must be accomplished with any old disease—What causes it? Under what circumstances? Who does it affect? How can we prevent it or cure it?—and then toss in a scarcity of cases. When doctors don’t see enough patients with the same condition, just recognizing that there are commonalities between them is a major challenge. How do you put together a useful clinical trial with a few hundred patients when there might only be 50 people in the world with a particular disease?

That’s why any advance in how we identify and treat rare disease is cause for celebration. Recently, social media has been a big part of many of those advances. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away. The same technology that lets us fund glowing plants or find fellow cake-decorating enthusiasts may turn out to be the weapon that takes down many rare diseases.

Corrie Painter was on the path to earning her PhD in biochemistry when she was diagnosed with angiosarcoma, a rare form of cancer inside the blood vessels that affects just a few hundred people globally each year. Fewer than a third of patients diagnosed with angiosarcoma will be alive five years later. Six years later, Painter has beaten the odds—but when she speaks about life immediately after diagnosis, one of the things she remembers most is searching online for other patients fighting the same disease. Most of the people she tracked down in these searches had already succumbed to the cancer. Rare disease is tremendously isolating, and patients like Painter learn quickly that few people can truly understand their story.

Today, the angiosarcoma community is vibrant and connected, due in large part to Painter’s efforts. She helped put together a Facebook group for patients or people interested in the disease; it now has more than 2,000 members. At a moment’s notice, they can offer advice to fellow patients, share the latest research news, agree to participate in trials, and more. Painter also cofounded a nonprofit, Angiosarcoma Awareness, that coordinates fundraising for the disease. By gathering the small world of people affected by angiosarcoma, she has made possible what no individual could do alone: raised significant amounts of money on a regular basis to accelerate research into the disease and potential treatments.

As the opportunity for building rare disease communities through social media becomes evident, many people are following the same path. Sonia Vallabh was diagnosed at age 27 with a genetic mutation that makes it a virtual certainty she will develop the same rare prion disease that killed her mother. She and her husband, Eric Minikel, launched a blog and a nonprofit called the Prion Alliance to spur fundraising efforts and provide a source of relevant news and updates for other patients with a range of prion diseases. In 2014, Techonomy covered the remarkable identification of the first several patients with a newly discovered disease; many of those patients were found after the first patient’s parents blogged about the unexpected diagnosis.

To be sure, advocacy groups successfully built rare disease communities long before social media existed. One organization, Genetic Alliance, has been particularly important in assisting rare disease foundations by providing much-needed resources and training in patient advocacy, clinical trials, and more. But as genome sequencing is used to solve more and more medical mystery cases, the rate at which rare diseases are being discovered is increasing.

These new diseases—seen in a single patient, or maybe a few patients—require every tool available to establish communities and resources for supporting patients and developing treatments. As more people sign up for consumer genomic services or online genealogy platforms that allow for connecting with other users, this kind of progress might occur even faster. Rare disease research has long been hobbled by the lack of funding from government agencies with broad mandates. As patients build real communities and organize their efforts, there is good reason to believe that many of these diseases can eventually be targeted and overcome.


Salisbury, Meredith. “Thanks to Social Media, Rare Progress on Rare Diseases – Techonomy.” Techonomy. N.p., 26 July 2016. Web. 18 Oct. 2016. <http://techonomy.com/2016/07/for-rare-diseases-social-media-can-achieve-rare-results/>.

Designing With The Patient in Mind

Incorporating patient values, preferences and needs into digital health interventions.

“We are stuck with technology when what we really want is just stuff that works.” Douglas Adams, The Hitchhikers Guide To The Galaxy.

A new report by Accenture [1]reveals that just two percent of patients at hospitals are using health apps provided for them. The research, which assessed mobile app use among the 100 largest U.S. hospitals, found that 66 percent of the hospitals have mobile apps for consumers and 38 percent of that subset have developed proprietary apps for their patients. However, a mere two percent of patients at those hospitals are using apps provided to them. This staggeringly low figure represents an alarming waste of resources in the healthcare industry.

Accenture found that “hospital apps are failing to engage patients by not aligning their functionality and user experience with what consumers expect and need.” For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. Brian Kalis, managing director of the health practice at Accenture, recommends that hospitals “must adopt a more patient-centric approach when developing new mobile health apps, or when revamping existing mobile apps.”

Respondents to a 2013 pilot study of 250 patient and consumer groups worldwide specified five main requirements of mobile health applications:

  1. Give people more control over their condition, or keep them healthy
  2. Be easy to use
  3. Be capable of being used regularly
  4. Allow networking with other people like them
  5. Be trustworthy

Whilst all patients rated these five specificities as important, the degree of importance varied. For instance, those with a long-term chronic condition, such as diabetes, specified that their top priority for a health app is to help them manage their condition; while people with a condition that affects personal mobility, such as a rheumatological condition, placed ease of use as a top priority for their apps.

As I wrote in a previous article, app developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes. The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives.  If an application does not solve a real problem for the patient it will not be adopted.

The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.” Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly?‘ If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

Craig Scherer, cofounder and senior partner of Insight Product Development, a design innovation consultancy that specializes in medical devices, consumer healthcare, and drug-delivery systems recommends an a design-approach which:

  • Understands the ergonomics and the physical experiences of how the device will be used
  • Curates the information that is most relevant to the user
  • Puts the device in the context of an user’s environment and lifestyle

Ergonomics concerns physical comfort and ease of use; curation means making the most importation information visible first; and finally, it’s important to understand how the device will work in the patient’s own environment. Developers must consider all aspects of the user’s interaction, not just the product itself. Adrian James, co-founder of Omada Health, a digital health company that designed a 16-week diabetes prevention program, recognised early on that one of the first steps in creating the company was getting user feedback – even before there was a product. “We’d walk with people through their homes,” James explained, “we’d hear their story, and then we’d put this concept in their hands and just let them tell us about what it was.”

Build It And They Will Come

An oft-repeated pattern reflects the pervasive notion that if we simply build a solution the “right way,” patients will embrace it. Not so. Dameyon Bonson, a national advisor on suicide prevention in Australia, is currently leading up a Movember funded research project using digital interventions to help men take action on mental health. He firmly believes “that there has been a rush to be ‘first’ to develop mobile health, taking the minimal viable product (MVP) approach a little too literally. MVP doesn’t mean serving up anything quickly; a lot of these mobile applications seem to have then been made ‘in a rush’. Evidence, and I mean good evidence, needs to support the development and I don’t think that (evidence) actually exists just yet. Simply automating what currently exists into mobile application, in my opinion is fraught with failure, and costly. Very costly. We are talking about the merging of two completely different worlds, mental health and technology.”

An app must seamlessly integrate into a user’s lifestyle to be accepted and well used; it needs to fulfill some kind of utility that is integral to our daily lives. It must also engage the end user. Dr Mitesh Patel and colleagues have recently argued that “the successful use and potential health benefits related to these devices depend more on the design of the engagement strategies than on the features of their technology.” Stanford behavioral health expert Stephanie Habif believes that emotional resonance is an important factor in designing successful health applications. “It’s not just enough to infect the brain and implant the knowledge”, she said, “You have to stir up the desire engine. You have to tap into emotion.”

Health Does Not Happen In A Silo

The most successful health applications understand the real problems that come with living with a disease or condition, and offer something that genuinely helps. A failure to recognize the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted digital health initiatives. It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to the development and adoption of innovative therapies and clinical solutions that truly meet patients’ needs. After all, to quote Darla Brown – a cancer patient who co-created digital health company Intake.Me – in a Stanford MedicineX session on patients as entrepreneurs, “who knows better than the patient what will have the most impact on their ability to get and stay well?” Co-panellist, Michael Seres, a digital health entrepreneur and founder of 11Health, a connected medical device company, describes himself as a “digital entrepreneur by accident and necessity.” “I was in hospital post [bowel] transplant with a stoma [a surgically created opening from an area inside the body to the outside] that leaked and healthcare professionals asking me to measure output. I just assumed there was a solution, so I did what I assumed everyone would do. I asked other patients. Let’s face it the greatest under-utilized resource in healthcare is patients. We usually have a solution for a practical problem. One thing is certain; we understand the end user needs. 20,000 patients online told me that there was no real solution to my problems so I built one. I had one big advantage, I understood what I needed. It always amazes me that in healthcare we spend millions building solutions that the end users don’t want. Why? Well often we are never asked. Would Amazon build a platform without consulting the end user? Would GM produce a new car without understanding their consumer? So why do we do it in healthcare? At every step I consulted patients and healthcare professionals as to whether it made sense. It just seemed obvious to me to do it this way.”

We have now entered an age in which the digital world will revolutionise health care, much as it has done in other industries. Yet while digital technology is poised to transform healthcare, its full potential will never be realized unless stakeholders work alongside patients in co-designing solutions that will truly engage, enable, and empower the end-user. To quote the late Jessie Gruman, founder of the Center for Advancing Health, in an open letter to mobile health developers, “While I can’t promise you that consultation with us is the magic key to successful, well-used apps, I can tell you that without it, your app doesn’t stand a chance.”


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Resource Links

[1] Accenture 

[2]

Social Media in Hematology

Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.

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Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

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Are We Ready for Mobile Health?

Are we ready for mHealth in 2016?

Mobile health, also called mHealth, is a term used for the practice of medicine and public health supported by mobile devices. It is a growing industry fuelled by the rise in ownership of personal mobile devices. A new national survey shows that more than eighty percent of US residents between the ages of 18 and 49 currently own an app-enabled mobile phone. Fifteen percent of the population have purchased wearable devices that connect to their phones adding functionality such as tracking capabilities. These devices worn on the body or incorporated into garments and accessories such as wristbands and watches, have given rise to a development known as the “quantified self” movement. By routinely tracking everyday behaviors, such as sleeping patterns and activity levels, wearables aim to move individuals closer to better health habits. According to the International Data Corporation Worldwide Quarterly Wearable Device Tracker, wearable device shipments reached 76.1 million units in 2015, up 163.6% from the 28.9 million units shipped in 2014.  But beyond the hype of the industry’s claims about the scale of wearable technology, how ready are we to use them in a clinical setting?

In spite of all the buzz and excitement, the reality is that the industry is still at the early stages of development and adoption. Many doctors question the clinical value of activity trackers and struggle to know what to do with the deluge of data wearables produce. Recording individual numbers is of little value when there is no system to extract meaning from it and show how it all works together. In an online survey conducted in September 2015  just 5% of respondents indicated that their organizations were “very prepared” to develop patient insight from emerging data sources like wearables. Nearly a quarter indicated their organizations were “very unprepared” and nearly half called their organizations “unprepared.”

Providers have concerns about reliability, interoperability and reimbursement. Research conducted at UCSF Center for Digital Health Innovation compared the data reported by consumer wearable devices to relevant clinical gold standards in multiple studies over the past two years. It found that very few devices currently on the market perform with the reliability of a medical-grade device. It’s a key point to note. Most health-related wearables aren’t regulated in the same way as medical-grade devices. Physicians are not only worried about the accuracy of the data being collected, but also have questions about unauthorized device use and data leaks. Consumers also need to trust that the data collected in their health apps will not be used for other purposes of which they are unaware. We can add to these concerns the fact that most health apps are limited in functionality, operate in isolation from each other and are interoperable within existing healthcare systems.

Even for those consumers who see value, faced with a multitude of fitness trackers, the unregulated and fragmented world of mHealth makes it difficult to select applications that provide true health benefits. User retention is also an issue. According to an MIT Technology Review report, about two-thirds of consumers who have downloaded an mHealth app have stopped using it. There are further consumer concerns such as privacy issues, the ability to transfer data across platforms and software, high data entry burden and cost factors which also limit mHealth efficacy.

mhealthGiven the questionable clinical relevance and poor usability scores, is mobile health technology of any real value in health care? While activity trackers can help you get fit, consumer wearables and apps have yet to be clinically proven. However, there is another type of health technology which shows more promise in a clinical setting. These target a specific clinical issue, for example a wristband which can detect seizures for people with epilepsy, a mobile app which helps manage cancer pain, a smart pill dispenser, and apps for monitoring post-operative quality of recovery of patients at home. A global survey conducted by market research company research2guidance, showed that people with chronic conditions are the most common target audience for app developers, and hospitals have replaced physicians as the second biggest target audience. A recent article in the Wall Street Journal reports that hospitals are developing mobile apps to help patients manage serious medical conditions and feed information back to their doctors between visits, often in real time.

Research conducted by Mayo Clinic showed that patients who attended cardiac rehabilitation and used a smartphone-based app to record daily measurements such as weight and blood pressure had greater improvements in cardiovascular risk factors. They also were less likely to be readmitted to hospital within 90 days of discharge, compared with patients who only attended cardiac rehabilitation. MD Anderson has also stepped up patient care with its new Apple Watch feasibility study. Its cancer center is distributing 30 Apple Watches to patients in various stages of treatment for breast cancer. An app called emPower will run on the Apple Watches and the users’ phones. Patients will use the device to answer quick multiple-choice questions about their mood, symptoms, possible treatment side effects (like headaches or nausea), and more. The provider will also use the device to capture activity and heart rate data to help them anticipate potential issues before they worsen and intervene sooner.

Apple’s release of its ResearchKit earlier this year opens up a promising avenue to extend mHealth applications to medical research. ResearchKit is an open-source set of tools that researchers can use to create a clinical research study. It can facilitate unprecedented, real-time access to potentially tens of millions of people, who will participate in research by submitting data through their iPhones. Within a day of launching, 11,000 participants signed up for a Stanford University cardiovascular trial. Stanford said at the time that it would normally take a national year-long effort to get that kind of scale.

What makes a health app successful?

Developers appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes. A new study from the New York University School of Medicine Department of Population Health reports that only 29% of smartphone owners using health apps say the apps have made a big impact on their health. That’s compared with 60.3% who see little to moderate improvement and 10.5% who say their health did not improve or even declined. A recent global study which analysed the views of patient and carer groups to determine what they want, but are not getting from current apps, reported that respondents wanted an app which provides trustworthy, accurate information alongside a guarantee that their personal data are secure. Respondents also wanted more meaningful and timely communication with their healthcare provider, including the ability to easily schedule a doctor’s appointment, or refill a prescription. Other factors included the ability to self-manage and make informed choices, taking into account different levels of health literacy and differing patient experiences with a medical condition or user experiences when health.

What can developers do to improve the current design and broaden the appeal adoption of mHealth applications?

The involvement of end users during the process of inventing and designing new technologies is a critical success factor. We cannot design health care solutions or services without taking into account patient values and preferences and the context in which they live their lives.   The lack of user involvement is one of the major reasons why health apps have failed to deliver thus far. Developers should involve patients, carers, and healthcare professionals at each stage of the app’s development, making sure it is in line with their needs. If an application does not solve a real problem for the patient it will not be adopted. The most successful health applications are those that understand the real-life problems that come with living with a condition and create solutions that meet real needs and make real impact. This can only be done by co-creating applications with patients and their carers.  It is patient input into a solution’s design, ongoing practice and evaluation that ultimately holds the key to success. After all, who knows better than the patient what will have the most impact on their ability to get and stay well?

mHealth Potential and Pitfalls

The rise in mobile and wireless technologies has the potential to transform the way healthcare services are delivered, particularly in the management of chronic diseases. Numerous studies have shown that patients who are “activated” in their care experience better health outcomes at lower costs compared to less activated patients. By creating an ecosystem of connected, wearable devices, we can deliver more timely care and monitor patient activity in real-time, thereby reducing hospital readmission rates, improving outcomes, and delivering cost savings. Global consulting firm Accenture recently conducted a study revealing that the United States would save approximately ten billion dollars annually with the introduction of a wider range of digital health services.

Mobile health technologies also have the potential to make healthcare more patient-centric, shifting the balance of power in the patient’s favour. Instead of being solely dependent on health providers, patients can manage their health more proactively. A new study presented this month at the American Medical Informatics Association conference in San Francisco reports that mHealth makes patients feel empowered in caring for their diabetes, leading to tangible health improvements in just a few weeks, as well as a heightened sense of control.

But for health consumers to fully tap the benefits of mHealth, the technology needs to be able to provide meaningful and actionable insights, alongside a UX that is easy and engaging. The value of an app or wearable will remain limited if it does not provide access to actionable data. Tracking metrics in isolation is not enough; you also need to know how to extract meaning from the numbers to turn data into smarter health decisions.

Key factors for adoption by providers and payers include technical support for integration, creating practical reimbursement models and ensuring interoperability within and across healthcare systems. The National Health Service (NHS) in England has begun to address issues of app curation and evaluation by creating its own apps library of health issues. By giving them official backing the NHS hope to give clinicians, patients and carers more confidence in using health apps. In the US two new academic partnerships are set to tackle app curation The MIT/Harvard partnership, Hacking Medicine Institute, believes the most effective apps will be chosen by consumers, not their doctors. Meanwhile a partnership between Columbia University’s HITLAB and Las Vegas-based Social Wellth is focused on putting apps through a rigorous set of standards.

As the mHealth market matures and standards improve, clear winners will emerge. The industry needs to shift its focus on delivering clinically effective tools that make a real impact in the lives of individuals. Only then can we truly declare mHealth a game-changer in health-care.

The Best of 2015

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As 2015 comes to an end, we would like to take a moment to highlight a few of our most popular posts and to thank the people who contributed to the popularity of these posts. We cannot thank the authors enough that have contributed, such as Marie Ennis-O’Connor, Tori Tomalia, Cindy Chmielewski, Dr. Michael Thompson, Edward Leigh, and Deana Hendrickson. Your efforts to Patient Empowerment Network are greatly appreciated.

best of people

From right to left: Edward Leigh, Tori Tomalia, Cindy Chmielewski, Marie Ennis-O’Connor, and Dr. Michael Thompson

PEN would also like to thank our sponsor AstraZeneca and our partner LUNGevity for their support in creating these posts.logos


 

Most Popular Posts of 2015

1.Virtual Patient Communities

Virtual patient communities offer support and information to cancer patients.

2. The Stigma of Lung Cancer

Tori Tomalia, a lung cancer patient explains the stigma of lung cancer, and that it doesn’t happen to only those who smoke.

3. Can Digital Wearables Help in Clinical Trials?

When applied to clinical trials, wearable technology is a potentially powerful research tool to gather clinical data in real-time and provides remote patient monitoring.

4. Clinical Trials 2.0: Reinventing Research For the Social Age

Clinical research is changing. No longer the sole preserve of clinicians and researchers, the Internet and new digital technologies are reinventing the way in which patients take part in the clinical trials process.

5. Cindy Chmielewski Talks About Clinical Trials

Carol Preston talks to myeloma patient Cindy Chmielewski about her role in advocating for clinical trials. Cindy explains how her cancer journey took her to self-advocacy and advocating for others in her community through social media.

6. Why So Few Adults in Clinical Trials

Dr. Michael Thompson discusses with Carol Preston the reasons behind some patients apprehensiveness towards clinical trials.

7. Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

What can you do in support of Lung Cancer Awareness Month

8. Activating a Community of People Living With Lung Cancer

LVNG With is a community for people living with a lung cancer diagnosis. These people share their story and help inspire others like them.

9. How to Develop a Personal Medical Resume

Edward Leigh, Founder and Director of The Center for Healthcare Communication, shares his tips for creating a “medical résumé” to ensure great healthcare experiences.

10. Connecting to Cancer Patients Online

In the Empowering Lung Cancer Patients Town Meeting, Deana Hendrickson talks about how important it is to connect with other patients and advocates online.


 

Also, be sure to check out

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The Clinical Trial Toolkit is a resource to help you find clinical trials and financial assistance. You can view our Patients Helping Patients Blog for various aspects and perspectives of clinical trials. Also, don’t miss our Videos of patients, caregivers, and healthcare professionals!

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#ASH15 Hosts Discussion on Social Media

#ASHSM Panel Discussion

#ASHSM Panel Discussion

At the recent American Society of Hematology annual meeting, Joseph Mikhael, MD, MEd, FRCPC (@jmikhaelmd) hosted a panel discussion on the importance of social media . The panel included Michael A. Thompson, MD PhD (@MTMDPhD), Cindy Chmielewski, BA (@MyelomaTeacher),  Navheet S Majhail, MD, MS, (@BldCancerDoc), Laura C. Michaelis, MD, (@lauracmichaelis), Jeff Szer, MB, BS, FRACP, (@marrow), and Amber M. Yates, MD, (@sicklecelldoc).

The panel discussed how social media can be used for research, education, patient information and patient advocacy. The great advantage of using social media is that it is not demanding and its use is flexible. The individual can tailor it to suit his own needs.

The panel focused on the use of twitter and the benefits it provides in the healthcare industry. Twitter is an unique way to share information quickly, rapidly, in real time, and across borders.During the panel discussion, the twitter hashtag for the session, #ASHSM was trending on twitter and the twitter stream was running strong.

One panel member, Cindy Chmielewski had this to say about social media and twitter:

“Social Media is a tool in medicine that shouldn’t be overlooked.  It’s a source of education.  Social media has helped me evolve from a passive bystander to an active partner on my healthcare team.  I use social media to share resources and important information, promote myeloma awareness, advocate for cancer friendly public policies, form communities, but most importantly to learn.
Twitter is one of my classrooms and doctors who tweet are my teachers. The power of Twitter should not be underestimated.  If you educate one patient advocate you can reach thousands of other patients. Studies show that educated, empowered patients have the best possible outcomes. Isn’t that what we all want?  It’s a win-win situation.” 
Watch the video below to learn more about this important panel discussion on the use of social media in medicine.

Using Social Media to Inform Patients in Real Time

Interview With Dr. Michael Thompson (@MTMDPhD), Medical Director, Early Phase Cancer Research Program, University of Wisconsin

Alongside interviewer Carol Preston, Dr. Michael Thompson explores some of the new and exciting technology utilized in healthcare and the benefits it presents. To make medical meetings and conferences accessible to all patients, real time feeds are used to “attend” meetings from around the world. The types of feeds available to patients include twitter feeds, blog posts, and even live streams with apps Meerkat and Periscope. This allows patients a valuable insight into what is happening at the national level and makes information easier to find when researching their disease. Watch the clip below as Dr. Thompson explains more fully:

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Using Social Media to Inform Patients in Real Time from Patient Empowerment Network on Vimeo.

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