Juliet Barbara, social media commentator for Forbes, shares in her article “How Twitter Chats Will Open Your Mind and Network:”
…Twitter chats are Twitter-based dialogues that anyone can join just by following and mentioning whatever hashtag is assigned to that chat. Because of the diverse group of people a Twitter chat can bring together in an open, “liquid” environment, there’s potential for those serendipitous connections that just may complete an idea.
The Partnership with Patients Summit was an event focused on assuring the patient is at the center of healthcare policy, care and R&D. I was fortunate to attend, and while there met several patients and advocates who use Twitter chats to connect on disease and health. I learned quite a bit about why patients Twitter chat, and I couldn’t help but wonder if there’s not an opportunity for those involved in drug development to learn from these social media mavens.
I recently connected with two Twitter chatters who were willing to share their perspective on patient-driven Twitter chats, as well as comment on potential for drug developers to engage.
Introducing @AfternoonNapper and @Strangely_T1
Sarah E. Kucharski, aka @AfternoonNapper is the the founder of FMD Chat, an international peer-to-peer support organization for those affected by fibromuscular dysplasia, a rare vascular disease. On her blog the afternoon nap society she
…promotes napping, ruminations from a prone position, health advocacy, and the patient voice in medicine. Special interests include the patient experience in healthcare settings, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, health literacy, advance planning and end-of-life issues.
…I want to share my experiences with other diabetics, so they can hopefully avoid some of the things that made me truly suffer. Diabetes was probably the least of those things.
I advocate for patients to become actively engaged, not only in managing their condition; but in stepping forward to lead their health-care team and to communicate with other diabetics either online or in person.
The commitment to sharing experiences and ideas that both Sarah and Scott have is impressive. Seeing them do so via Twitter and other social media is equally so. Below are some questions and their unfiltered responses. I wonder what drug developers might learn from or contribute to patient-driven Twitter chats.
Some questions and answers
1. What do patients get out of Twitter chats?
Sarah: The great advantage to Twitter chats is that patients can connect with a vast variety of resources from the comfort of their own home. Sometimes the hardest part of learning about a condition is not coming up with the questions but knowing who to ask. More and more healthcare providers and educated patients are joining Twitter and other social media platforms in order to share quality knowledge, therefore patients are no longer limited to asking their individual doctors, who in today’s market, have 15 minutes or less to spend in an office visit. This isn’t to say that patients should try to replace their doctor’s advice with information gleaned from social media – it’s to say that patients can become an active part of their care by becoming informed and working in concert with their doctors to achieve what they as patients want as an outcome.
We all define health differently; we all have different needs and desires to consider. However, we don’t necessarily know that. It’s only in talking to others that we find out how we differ, how we are the same, and that we have choices to make about how we are going to live and how we are going to die. Thanks to the dialogue facilitated by Twitter chats I have learned more about myself and what I want for my life, and I have been able to apply what I have learned to my role as a health advocate to reinforce my knowledge that patients are, and always will be, people first.
Scott: We get to understand that we are not alone in whatever condition we are facing. We also get to learn from the experiences of other patients. We can learn an incredible amount about a condition in language that a layman can understand. We also can find similarities with other condition communities that would not be obvious without the open communication that twitter provides.
2. What are some challenges or drawbacks?
Sarah: One of the very first Twitter chats that I participated in was #hcsm (healthcare and social media) which is at 9 p.m. ET on Sundays. To say I participated actually is an overstatement – I watched comments fly by faster than I could read them much less process them. For those who are inexperienced, very active chats like #hcsm can move so fast that it’s overwhelming and consequently they may not try again. My advice is to stick with it. We chatters call those who don’t comment but read everyone else’s comments “lurkers,” which is in no way meant as a pejorative. Many people lurk until they feel like they have a more solid grasp on how to participate and what they want to say – that’s completely okay.
Another challenge with Twitter chats is keeping the material engaging and drawing in new chatters to bring new ideas to the discussion. For example, weekly chats may eventually turn into rehashing the same old things, while less frequent chats may be easily forgotten and sparsely attended. As with any dialogue, a Twitter chat must be facilitated and maintained.
Commonly referred to problems with Tweet chats echo the problems of Twitter-one can’t hear a speaker’s tone or see his or her face, and statements may only be 140 characters at a time. There’s lots of room for misinterpretation if one is not careful. This particularly comes into play when there may be a series of tweets explaining a point and one or two individual tweets may later be taken out of context and misunderstood.
Scott: As with anything else, if it sounds too good to be true, it probably is. So use common sense.
There is no body language or tone of voice in a tweet, and it can be easily misinterpreted.
Healthcare tends to be an emotional subject for some people, especially those just beginning to engage with others. People often form very strong opinions about what is “right” regarding a condition, it’s treatments, and it’s outcomes making it difficult to truly engage with them. People and companies must realize that engagement is a two way street. Some people just won’t actually engage, some just aren’t ready to and it’s important for us to help them. Companies must realize that simply using Twitter to tell us about a product is called advertising, not engagement.
3. What are 2-3 insights you’ve gained that you wouldn’t know otherwise?
Sarah: About a year and a half ago, I thought Twitter was the most vapid, useless thing in the world. I didn’t know that “real” people were using it as a method to connect with one another and exchange ideas. Only by being curious and willing to try something new did I finally sign up for an account. It’s been one of the best decisions I’ve ever made. Where I live, I do not have in-person access to groundbreaking healthcare research or technology conferences or a social environment that pushes innovation.
With Twitter – and the rest of the internet at large – I do. It was a tremendous surprise to me to find out that there was such a wealth of good health information available via social media. It was a surprise to find out that there are advocates who, like me, are pushing for change. It was a surprise that I would find so much of a purpose for myself.
Scott: Patients have a great deal in common no matter what the condition. We can learn an incredible amount from other patient communities by engaging with them. If they say something that you don’t clearly understand, ask about it. Most people will be happy to share.
Also it is very, very important to remember that, no matter what condition is involved, the most serious condition in the world is the one that affects you or a loved one.
4. Do you ever talk about drug development or clinical trials?
Sarah: As a rare disease patient, drug development and clinical trials are rather wishful thinking. The vast majority of the rare disease population has no FDA-approved treatment. Think about that. Rare diseases affect more than 30 million Americans, so more than 30 million Americans are waiting for pharma to deem them worth investing in. The problem is that those 30 million Americans are divided among more than 7,000 rare diseases, so disease population groups are small. It’s very difficult to be in a position in which I am deemed not worth trying to cure. I understand the economics of it, but that doesn’t mean I like it.
When research opportunities to understand my disease come along, I am eager to participate because I don’t want patients 10 years in the future to be in the same position that I’m in now – working with doctors who know little about the disease, trying manage symptoms about which they don’t understand the cause.
Scott: Usually just to complain about how long it takes something to hit the market…
Development and trials are such a closed system right now, that the patient really can’t do anything except discuss a trial they were in and the process involved, not how it was developed.
5. Would there be benefit to patients and/or drug developers if drug developers participated? If so, how?
Sarah: There is an element in pharma that seems unaddressed and that is customer service. How can one know what a customer wants if one never asks? The pharma model seems to address overarching complaints while having less regard for underlying issues. No, I don’t have a treatment or a cure for fibromuscular dysplasia, but if pharma could address issues that commonly affect those in our disease community – migraine, fatigue, pain – then we’d at least be getting somewhere.
We need a solution, and it would make sense to work with others from similar disease communities that share our needs and limitations in order to develop a pharma solution that would apply to a cross section of patients. One area just waiting to be targeted is the migraine market which is almost exclusively held by vasoconstrictors. There need to be more options for those who are not advised to take vasoconstrictors, i.e. stroke patients, but still must contend with migraines. Is pharma as a whole even aware of this issue? I don’t know.
Scott: Development of true patient engagement would allow developers to see exactly what patients are most interested in treatment-wise, and that could be very different from what a researcher is looking at for the next “breakthrough” drug. Also, off-label usages of drugs is discussed among patients which may provide additional insight to researchers.
Patients could learn about how trials are developed and why they are conducted the way they are. It’s very possible that there may be some patient suggestions that could make the trial less cumbersome for the participants. It might also reinforce the concept that trial participants are people first, participants second.
What do you think?
Twitter chats are an excellent example of how patients are leveraging social media to connect with each other on issues of health and wellness. The real-time stream of ideas and sharing that occurs in Twitter chats help meet a variety of patient’s needs, and is an opportunity to hear first hand what’s important. Given our belief that drug development needs to be more open to and directed by patient need and voice, would Twitter chatting be one way to hear that voice? We welcome your comments and ideas.