HLOL Podcast Transcripts

Health Literacy

Each Patient’s Information Journey (HLOL #165)

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 about health literacy with some pretty amazing people.

Today, I’m talking with Andy Rosenberg, who has over 25 years of experience as a political lobbyist, Capitol Hill staffer and former congressional candidate.

In 2010, Andy helped create a healthy policy and government affairs firm called Thorn Run Partners. More recently, he founded a startup company called Responsum that is developing an innovative educational tool for people with chronic disease.

Andy and I are both members of the Communication and Dissemination Research Advisory Panel for PCORI, or Patient Centered Outcomes Research.

I was intrigued when he spoke to the group about Responsum. I think you’ll find this new patient education tool pretty interesting, too.

Welcome, Andy.

Andy Rosenberg: Hello, Helen. It’s a pleasure to be here.

Helen Osborne: This seems quite a leap. You’re a political person and now you’re doing this startup about an educational tool for people with chronic disease. Tell us more. What are you coming up with and creating, and why?

Andy Rosenberg: Helen, this is a project that’s born of a personal experience having gone through some healthcare challenges with my mom as well as with some good friends, helping them as an unofficial navigator of the healthcare system and really making me attuned to some of the challenges that people with chronic conditions have to face.

Helen Osborne: Certainly, people do all kinds of things we come up against. You’re taking your skills that you know through lobbying and political activism and putting that toward navigating health?

Andy Rosenberg: Yes, pretty much. I’ve spent the better part of my career learning about policies that are designed to drive greater patient participation in their healthcare decision-making and more broadly expanding and amplifying the voice of patients in the healthcare system.

I was able to see the connection between what I’ve been doing professionally and the gaps in the healthcare system that I saw through my personal life.

Helen Osborne: Thanks. Tell us all about Responsum. I was pretty impressed when you spoke about it at one of our meetings.

Andy Rosenberg: Thanks, Helen. On a broad level, one of the challenges that I’m trying to overcome is this idea that the internet appears to a patient, or in my case to a caregiver, as this great wealth of opportunity and information for patients and caregivers that are dealing with chronic diseases, especially rare diseases.

What you quickly find out when you’re trying to utilize the internet for yourself or for a loved one is that the information on the web is often outdated. It’s almost always overwhelming. It’s never customized or tailored to your needs.

You often actually wind up being attracted, like a mirage, to the web, and in reality, it can almost drown you. It can be very difficult to use.

Helen Osborne: Certainly, even if you can type correctly and put in the right word of whatever disease, you’ll get hundreds of thousands of responses. How do you figure that out? That’s really intriguing. How are you planning to help others make sense of all that?

Andy Rosenberg: We’re testing this out on one rare condition called idiopathic pulmonary fibrosis. It’s a lung disease that has between 100,000 and 200,000 people with it in the United States.

Helen Osborne: Is that considered a rare disease?

Andy Rosenberg: It is considered a rare disease, but it’s getting an increasing amount of attention because there is no cure. There’s been some breakthrough recently in some treatments, but it’s a really pernicious illness.

What we’re trying to do in essence is help to create a curated, customized web experience for people with IPF. We’ve got a team of writers and researchers that are combing the internet to look for information content, not just articles but blog posts, clinical trial abstracts and the like, breaking those down into book reports, digestible, understandable summaries, keyword tagging them and categorizing them based on topic.

Then the idea is that, as patients use Responsum and they share information about themselves and their profile, age, sex, the drugs they’re on, etc., we can, by creating a complicated algorithm, meaning a matching equation, create a newsfeed that gives them these summaries based upon where they are in their journey and who they are as individuals.

Helen Osborne: That’s neat. When you use that term newsfeed, I can make sense of that. Other sites you go to might just send you articles on what you are particularly interested in. Is that what you mean by curated and customized?

Andy Rosenberg: Curated means that you’ve got actually a professional organization with medical backgrounds behind it that are going on to the web and making sure that we’re only including things that are current, relevant and accurate.

The internet is like your closet. People hang stuff in there, but they rarely clear it out. As a result, when you go and search for something, there’s not some sort of great librarian in the sky that’s making sure that it’s current, or that it’s even accurate or comes from a reliable source.

Part of what we’re trying to drive is a web experience that is reliable. In terms of curated and customized, if you’re somebody that has just been diagnosed, you’re going to probably be getting different articles in your newsfeed than somebody who’s had the disease for two or three years.

Helen Osborne: I refer to that often as “the continuum of care,” where you are in there. I’m glad you’re bringing up that point, whether you’re newly diagnosed or have been living with this. Would the newsfeed be different if you’re the caregiver or loved one?

Andy Rosenberg: Absolutely. You may get some similar articles because it’s going to be based largely upon the patient profile. For example, one of our categories of content is around caregivers. There are articles about how to be a better caregiver or helping to deal with the anxiety and stress of being a caregiver that might not be appropriate for the patient or particularly useful, but might be very useful for a caregiver.

Helen Osborne: This site is not yet up, I gather?

Andy Rosenberg: No. Some of your listeners may be listening to this in the future. By September, we hope to be up and running.

Helen Osborne: September 2017, this should be up and running. This is a model unlike any other out there. I like how you referred to this as your own librarian in the cloud in the sky.

You talked about a patient profile. People enter their own information. I want to know how secure that is and how that affects your information search.

Andy Rosenberg: We’ll be completely HIPAA compliant, meaning that we cannot and will not share anybody’s data with anybody else without their explicit permission.

That said, we won’t be doing that anyway, although an individual does have the right to share their data. One of the features is that you can bring people into your team so that you can allow access to your profile for your caregivers, your doctors and friends.

You may want to give them access to some parts and not others. You may want them to be able to see the same news articles you’re getting, but maybe only some of them will you allow to actually review and edit your profile.

Your profile will include everything from your personal information to the drugs that you’re on to your comorbidities and the like.

You can join Responsum. Obviously, for one thing, it’s free.

Helen Osborne: It is free. That’s good. The name of the website? We’ll have it on your Health Literacy Out Loud web page too.

Andy Rosenberg: Thank you. It will be www.Responsum.com, I believe, although our hope right now is to do it in partnership with the Pulmonary Fibrosis Foundation, which is the leading IPF patient group.

Any patient who wanted to enter their name as Mickey Mouse would be free to do that. There’s no need to participate and to give your personal ID if you don’t want to.

Helen Osborne: Good. Thanks for that. I know we’ve talked about this for quite a while now. I know you’re working tremendously hard on it. It sounds like a wonderful way to bring information together that’s appropriate and accurate and up to date. What about issues about health literacy?

I’ll tell you about health literacy, which is my world and probably many of the listeners’ worlds. We’re particularly interested about people who might have extra difficulty accessing information and making sense of that, whether it’s through issues of age, language, culture or, certainly, literacy. What are you learning about your intended users?

Andy Rosenberg: Really fascinating question. In a very basic way, we are trying to address the health literacy challenge simply by providing a more easy-to-digest, understandable version of some of the more complex, medically oriented content that’s on the web.

We also spent an awful lot of time, over a year, with Carnegie Mellon University in Pittsburgh and a group of amazing researcher graduate students there, who interviewed dozens of patients with chronic diseases and really learned from them about what we and others call the patient journey.

We mapped the patient journey through five stages of chronic disease patientness: when they first get their symptoms, their diagnosis, when they’re doing their own research on it, when they’re getting treatment, and then how they live with the disease. Under each of those five categories, we learned different things about them.

Every patient is different, of course, but there were some trends you can pick up about different feelings that patients would go through at these different points in their journey.

There were different points where they wanted to crawl under a cover and just pretend it wasn’t happening, to other points where they learned to accept it and they actually want to share the experience and help other patients through it.

It’s just fascinating at these different points, Helen. Maybe you know this better than I do, that there are different times when you want different types of information.

Helen Osborne: I know when I went through stuff, and when we get to a certain age, all of us are going to go through stuff, I was really surprised by a diagnosis. I was rather stunned by it. For at least a while, I didn’t want to learn anymore.

Before that happened to me, I kept thinking, “I do health literacy. Everybody wants to learn everything that they can.” But for a while, I was the one who just wanted to snuggle down under the covers and not have to learn anymore.

I’m really interested how you’re mapping out this patient’s journey, really a journey of information. It’s when they first know the symptoms, when they first get the diagnosis, when they start to do their own research, when they’re getting treated, and then when they’re living with it. That’s a very interesting way of breaking out this information journey.

Andy Rosenberg: It was fascinating.

One of the challenges that we’re going to have, I know we’re not going to get it right, right off the bat. So this is going to be a learning experience for our patient tool as much as it’s been for us.

The idea is to hone this tool through a technology term called machine learning. The computer will actually learn over the course of time, based upon the different articles a patient chooses to read, the different ways a patient answers questions coupled with how a patient sets goals, which they can do through our website and their profile.

We can begin to hone the newsfeed to better understand where they are and what information is going to be of value to them at a given time.

Helen Osborne: Is that like how Netflix says, “Based on you having seen this movie, you’re going to like these other five”?

Andy Rosenberg: Right. It should be easy, right? It’s like that except, as you know, a patient is a much more complex character than a movie consumer, but along the same lines.

Helen Osborne: That’s neat. After a while, I learned to trust that too. It sounds like you’re trying to embody what you did for your mom and some friends, and be that guide and help them get to where they need to go.

If someone’s not computer-savvy and not strong in literacy skills, is there any other way to access this? Or is that just a basic skill you need, being comfortable with technology?

Andy Rosenberg: It’s a great question. With regard to what we’re doing, it’s going to be months before we’re out around this one disease. It’s going to be years before the world has access to multiple services, like Responsum, that help folks to navigate, curate and better utilize the web.

I know, Helen, that a lot of your listeners are healthcare providers and are in that community. I guess my advice to them would be that one of the things that we learned from a lot of the patients we interviewed was when they were given this diagnosis, and it’s a very dire diagnosis, their doctors would often tell them, “Whatever you do, don’t go on the internet. You’re just going to scare the pants off yourself. Most of what you find on there is not either accurate or it’s not relevant to you. Don’t go online.” Without exception, everybody goes online.

Helen Osborne: Everybody who I know who’s ever gotten that advice, the next thing they do is go online. If they’re telling me about it, I, as their friend and a nosy busybody, go online too. We’re all searching for stuff out there.

Andy Rosenberg: Of course.

Helen Osborne: That doesn’t work. What can our listeners do? What is your advice?

Andy Rosenberg: My advice would be, if you’re a practitioner in a given field, take the time and do the due diligence to try to understand what resources are out there online. Understand which websites and bloggers are trustworthy.

It’s not that you have to review every blog post or every article that comes out, but at least be able to give your patients or caregivers of patients a list of approved resources or places where they ought to go for responsible information. I think that’s really a great way to start.

Helen Osborne: That sounds like it’s not the same as you did just helping this one person important in your life. It’s not like what you’re trying to do on a big scale on the internet. But be that in-between in how we can help guide people to the information they need now. That sounds really neat.

I know you’re doing this for one fairly rare disease right now. What’s your big vision for where this would go?

Andy Rosenberg: My big vision is for us to demonstrate in the next year or so that the patients that use Responsum with IPF have a higher level of self-confidence and knowledge about what they’re doing and are becoming better patients. That’s driving better healthcare outcomes for them.

Then eventually, we take Responsum and we begin to partner with other patient groups in other chronic disease spaces and build off the same basic skeleton.

Of course, the content needs to be personalized or customized for each disease, and the different functionalities of each of these projects have to be different because people with different diseases have different needs.

My hope is that eventually there will be a curated web experience, a trusted web experience, for everybody with a chronic disease that they can go to and do their own research. Then they’re in a better position to come to decisions with their doctor about what’s in their best interest and to do it from a place of knowledge.

Helen Osborne: That’s wonderful. Thank you. I often talk about the role of the patient and the role of provider, of course. The role of patients as I often describe, is to be experts in advocating for ourselves. We need to be experts at being patients. Nobody else knows our whole story.

You, Andy, are giving us tools and resources, and creating a new model to be doing that. Thank you for sharing that with our listeners, and especially for helping us forge ahead and help everyone understand their own disease and condition even better. Thanks, Andy.

Andy Rosenberg: Thank you, Helen.

Helen Osborne: As we just head from Andy Rosenberg, it’s important for us to help our patients be even better patients. But doing so isn’t always easy. For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com.

While you are there, feel free to 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 www.HealthLiteracyOutLoud.org.

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

Until next time, I’m Helen Osborne

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer