HLOL Podcast Transcripts

Health Literacy

Using Technology to Share and Communicate the Experience of Illness (HLOL #166)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month, and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on conversations with some amazing people.

Today, I’m talking with Pam Ressler who is the founder of Stress Resources in Concord, Massachusetts, a firm that specializes in building resilience for individuals and organizations through connection, communication and compassion.

Among her many accomplishments, Pam teaches in the Pain Research Education and Policy Program at Tufts University. She serves on the Executive Board for Medicine X at Stanford University and speaks about resilience at conferences worldwide. Pam is also an expert on using social media in healthcare.

Pam not only is a friend and colleague, but she’s also my go-to person about all things social media. Welcome, Pam.

Pam Ressler: Helen, it’s so nice to talk to you. Thank you for inviting me.

Helen Osborne: I’m actually inviting you again, because five years ago or so, you and I did a podcast about blogging to communicate the patient’s experience of illness.

Recently, I called you because I wanted to know something about social media and you told me, “Blogging is still happening, but there’s a lot more.” And started telling me all about the many ways that people are communicating in this digital age.

Thank you for being a guest. Let’s talk about that because this is information that likely a lot of listeners want to hear.

What’s happening? How are people sharing and communicating their experience of illness and exchanging information in today’s digital age?

Pam Ressler: I think we have really evolved in the ability to connect and share, certainly in those five years since we last talked about blogging.

Blogging is still a wonderful way for people, especially with chronic illness, to express the experience that they are having, not just with the disease, but with things going on in their life in general. That’s certainly a wonderful means to do that.

Helen Osborne: By blogging, are you talking about when someone might write, “I’m home alone. Boy, it really hurts a lot today. This is what’s helpful.” Is that what you mean?

Pam Ressler: That could be, but I’m thinking of blogs that are actually more holistic than that. What I mean by holistic is, “I had a really good day today. I was able to take the kids to the park and everything. But man, the pain really came back at the end of the day. I’m persevering. I’m getting on with my life.”

I find that blogs tend to transition over time from maybe being information posts when somebody first has a diagnosis for their family and friends to being much more of sharing the good and the bad pieces of a lifelong illness or a chronic illness.

What I’m seeing as an evolution is that blogs, even though people could comment on them, were really one person posting their experience.

In those five years, I think we have moved toward much more sharing than a singular blog. I’ve seen a huge uptick in what we call peer-to-peer health communities online.

Helen Osborne: Explain those. What are they?

Pam Ressler: Typically in healthcare, we’ve offered patient support groups. Often, they’re in hospital settings or maybe in clinics. Typically, they’re run and facilitated by a healthcare professional. Patients or families discuss by showing up at the hospital and coming to a support group once a week.

Helen Osborne: At the hospital’s place, at the hospital’s time, with the hospital’s designated leader.

Pam Ressler: Correct.

Helen Osborne: That’s the old model.

Pam Ressler: That model is still very prevalent. When people talk about support group models, that’s often what they’re referring to.

What we have seen in the last five or six years is this move toward the ability for people globally to connect via the internet and different platforms, one being Twitter and others being self-contained online communities that are sponsored by an organization or a business.

People can share their experience with others who have the same or similar illnesses. It’s not geography based. It’s also not healthcare professional based.

Helen Osborne: Is that good, or not?

Pam Ressler: I think there are differing opinions. I think it’s extremely helpful.

You alluded in my intro that I work with folks with chronic pain conditions or conditions that may be life changing or life limiting. What we find is that diagnosis of a chronic illness is very isolating. It could be isolating emotionally. It also can be isolating physically.

It’s really hard for many people to actually attend a support group in those models that we’ve been pushing for a number of years. I see a great new frontier in this idea of peer-to-peer. It’s not that different from what we used to do around the kitchen table or across the back fence.

Helen Osborne: We’re just doing it on our phone?

Pam Ressler: We’re doing it in this global, digital community versus showing up at somebody’s back door.

Helen Osborne: Pam, I think when I asked, “Is it good?” one of my questions is when you talk about peer-to-peer, I’m making the assumption that it’s people with this chronic condition talking to other people with this chronic condition and I don’t hear where professionals come in that.

Being someone who was a therapist zillions of years ago, I’m used to health professionals leading the way and making sure everything works the way it should. Are we removed from that equation? Is that good?

Pam Ressler: I don’t think we’re removed. I think we are helping patients have mastery of their chronic illness in a way that we perhaps didn’t do before. What I have seen is that online communities are pretty self-regulating and well monitored by the participants.

Helen Osborne: Do you mean if somebody came out with a notion that is not fact based?

Pam Ressler: Right, or if somebody is being exceptionally rude or inappropriate, that is not going to go on for long. There are moderators that would block them, etc. It isn’t the free-for-all I think that sometimes people fear.

My thought is that patients with chronic illness are the experts in their disease along with help from the medical world.

Helen Osborne: I like the way you frame it. Patients are experts with help from the medical world.

Pam Ressler: For their own disease, yes. They can choose to consult with us as professionals. But they may also choose to engage in their healthcare and their overall experience of wellness or illness with others who have similar experiences.

Often, with rare diseases, in the traditional model, someone may never meet anybody with that disease because they’re not in that geographic location.

One of the things that this field of digital health is offering are those connections for people when talking about a rare disease or one that perhaps has different types of treatment in different areas. It creates a sense of engagement, but also a sense of confidence and competence, I believe.

Helen Osborne: Wow. I like that a lot. Can you give us some examples of ways people are doing this peer-to-peer communication these days?

Pam Ressler: A lot of this is happening in the Twitter-sphere.

I know people have very negative connotations about what goes on on Twitter, but one of the bright lights I see is things that have been dubbed “tweet chats.” They are scheduled. Typically, they’re about an hour long.

They’re times when people are all using the same label, or what we call hashtag, when you see the # with letters after it. People use that same hashtag at the same time and create a synchronous forum.

Helen Osborne: Synchronous means it’s happening at the same time.

Pam Ressler: At the same time, so everyone is a part of the conversation as it happens. The beauty is that there are many different voices happening. The downside is it can be a bit like drinking from the firehose.

Helen Osborne: I’ve heard it described that way.

Pam Ressler: There’s so much going on. The other part of these tweet chats is that they are archived. One can go back and simply put the same hashtag in at any point and read the archive of what went on during that tweet chat.

Helen Osborne: That’s really neat to see that you can look for it. Everyone is just communicating in 140 characters and that includes spaces. Is that correct?

Pam Ressler: It does happen. Brevity is important. However, remember that you can attach things into Twitter, like a link to something else for people to look at.

Helen Osborne: They’re long enough that they have some meat and some substance to whatever you post.

Pam Ressler: Correct. Generally, the best run of these healthcare tweet chats have some pretty skilled moderators. Generally, they’re just members of the community who will tweet out three topics or subtopics of discussion for that hour. That keeps everyone on topic.

There actually is a healthcare hashtag project on a site called Symplur.

Helen Osborne:We’ll have that link on your Health Literacy Out Loud web page.

Pam Ressler: If you go to that site, you can search by disease type or by time of day for all of the aggregated health hashtags.

Helen Osborne: Wow.

Pam Ressler: You can just listen in. Lurkers are encouraged.

Helen Osborne: That’s the Healthcare Hashtag Project. That’s neat.

I believe you, I know you, I trust you. If you say this is a good use of Twitter, let’s go.

We only have a couple of minutes left, Pam. This drinking out of a firehose metaphor, can you just tell us other ways that people are doing this sharing, communicating and supporting one another in this digital age?

Pam Ressler: Absolutely. There are some organizations, Inspire being one of them, Smart Patients being another and actually the Mayo Clinic has something called Mayo Connect. They are aggregated communities around certain diseases and illnesses that are very helpful.

These are a little different than what I was mentioning where one tunes in at a certain time and is typing at 140 characters. They’re very supportive communities, which is really interesting.

People take roles in this very democratic way of engaging, by helping those who are newly diagnosed get the information they need. Perhaps their role changes after a while into being more of the sage of the online community.

Helen Osborne: Wouldn’t that happen as someone goes from being newly diagnosed to living with that condition for a while? We all become sages in our own lives.

Pam Ressler: We may in our own, but one of the things that I think is helpful is that, again, this idea of isolation when one has a chronic illness is very prevalent. The ability to be a teacher again to others at different stages of illness, I think, is extremely helpful.

You’re absolutely right, Helen. We become experts in our own illness or recovery, but I think that there is this intense desire to make meaning of what has happened to us in some way, and I think this provides a vehicle to do that.

Helen Osborne: It sounds like we’ve come a long way in five years, but not quite come a long way in five years. These online communities sound like they’re just a more robust form of that blogging, so it’s more people sharing in there. The tweeting certainly is something we didn’t talk about five years ago.

I’m going to ask you now to put on that digital hat of yours. If we were to have this conversation again in five years, what would we be talking about?

Pam Ressler: Oh my gosh. I would love to time travel a bit and see. I don’t know. What I see is we started with this Web 1.0 back when people started to have websites, and we thought that’s where we were going to stop. Then we moved into the 2.0 generation. All of this is within the span of 15 years here.

The 2.0 was actually the ability to not just broadcast, but to have a back and forth. I’m seeing now as we evolve even beyond 2.0 that we can start calling it Health 3.0 perhaps. I see a move toward greater personalization.

One of the things that I didn’t mention with the online communities is some of them help people find clinical trials that really support what their individual genetic makeup is with disease. I’m seeing this move into more personalized connections.

Helen Osborne: It sounds like it’s into more action, too.

Pam Ressler: Yes.

Helen Osborne: Information is great and support is wonderful. But it sounds like there are ways you can be doing even more.

Pam, you are my go-to person on all of these things. I keep learning and learning from you. I hope that our listeners did too.

Thank you so much for again being a guest on Health Literacy Out Loud.

Pam Ressler: It’s always a pleasure, Helen. Thank you for inviting me again.

Helen Osborne: I’ll see you in five years online.

As we just heard from Pam Ressler, social media is a way of communicating health information. But finding ways to communicate effectively can be hard to do.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there please sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, Stitcher Radio and the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.org.

Did you like this podcast? Even better, did you learn something new? I sure hope so. If you did, tell your friends, tweet your friends, tell your colleagues, tweet your colleagues. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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