Linda Stotsky points out specific ways the health care system can stand up for patient advocacy. Linda addresses questions such as how to overcome resistance in the system and what marketers can do about it by including the patient voice in their storytelling. You will find her personal perspective refreshing and insightful.

Show notes

Air Date: October 28, 2015
Guest: Linda Stotsky, North American Director of Business Development at LogicNets

0:40 Next week: HCIC preview with Steve Koch and Russ Maloney
1:55 Introducing Linda Stotsky
3:20 Can the world handle two percussionists on the same show?!
4:24 Where are the greatest opportunities for health IT in patient advocacy?
9:08 Patient advocacy is more than just patient portals
12:12 What are the greatest challenges in patient advocacy right now?
15:00 Overcoming resistance in the system
18:30 What changes would Linda like to see in the next 5 years?
21:12 How can marketers advance patient advocacy?
23:18 Bonus question: If you could join a music group or rock band for a day, who would it be?

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Guest biography

Linda is a health IT systems and services geek with a passion for connecting people, process and product. She is a passionate advocate for the right information at the right time to the right individual via the right method of transmission. She has worked in EMR, eRX, HIE and patient engagement, and is currently the North American Director of Business Development at LogicNets, a Clinical Decision Support company based in Washington DC.

Linda champions usable design, IT platforms that enhance our ability to share information, optimize documentation, and improve patient outcomes. She is a patient advocate and national speaker, championing care along the continuum. She’s a frequent blog contributor, and social media disrupter, and proudly walked as patient #117 in the Walking Gallery of Healthcare.

Engage with Linda on Twitter at @EMRAnswers.

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Full transcription

Jared Johnson: Hello, my friends and welcome to the Health IT Marketing Podcast. The podcast for the heartbeat of healthcare. I’m your host Jared Johnson of Ultera Digital. I’m coming at you again from the desert beauty of Phoenix, Arizona. Thanks for being on board today and thanks for your contributions to moving healthcare forward. This is the first and only podcast dedicated specifically to the health IT marketing community. Welcome aboard.

Next week we have a special treat. We’re turning our eyes to HCIC, the Health Care Internet Conference in Orlando, Florida, November 8, through 11. I’ll have a couple of special guests with me that day. I will have Steve Koch and Russ Maloney from Sitewire Health here to discuss a preview of our presentation that we are giving at HCIC on wearables and the internet of things in the exam room.

We’ve done a lot of research on this topic and we’ll really be excited to give a little bit of a preview of what we’ll be talking about at the conference. We’ll be doing a joint podcast.

For those of you who aren’t aware Steve and Russ give a podcast as well, a pretty awesome one at that. It is healthcare Crux Points, and it is sponsored by Sitewire Health. And on Crux Points, Steve and Russ speak with guests about all sorts of turning points that are making a difference in healthcare.

They have a great marketing lens that they look through, and invite their guests to speak on different topics there. I invite you to check out Crux Points there if you haven’t already, and like I said, our program next week will be Steven Russ, being able to preview some of the things we’ll be discussing about wearables and the internet of things.

Well, I want to welcome Linda Stotsky to the podcast. Linda’s a health IT systems and services geek. Those are her own words. She has a passion for connecting people, processes and product. She’s a passionate advocate for the right information at the right time to the right individual via the right method of transmission.

She’s worked in EMR, ERX, HIE and patient engagement, and is currently the North American Director of business development at LogicNets, a clinical decision support company based in Washington DC. Linda champions usable design, IT platforms that enhance our ability to share information and optimize documentation, and improve patient outcomes. Many of you are very familiar with her efforts in each of those topics.

She is a vivid patient advocate and national speaker championing care all along the continuum. She’s a frequent blog contributor and social media disruptor and proudly walks as patient number 117 in the walking gallery of healthcare. She can be found on Twitter at the handle @emranswers. I want to welcome Linda to the program today. Thanks for being with us today Linda. How are you?

Linda Stotsky: Hi Jared. Good. How are you doing? Thanks for having me today.

Jared Johnson: I’m doing fantastic today. I hear a rumor here that at one point that you’ve been a percussionist at one point in your life. It’s a little dangerous having two percussionists talking at the same time here. But can you tell us a little bit about percussion that you have done in your life?

Linda Stotsky: Well, I have to say, I played at drums more than I played the drums. I did take drum lessons from Paul Riddle, for all of those folks who remember the Marshall Tucker Band. I’ve had a lot of fun with drums and percussions. I’m not great at either one. I had a lot of fun and I have a huge fondness for percussion instruments, as I heard you do.

Jared Johnson: I do. I wish I could say I do it as often as I’d like, but yeah, it’s fun isn’t it? Just a way to take care of however you’re feeling that day and I still enjoy that a lot.

Well Linda, with your background you include a lot of focus on patient advocacy and we’re going to dive into that topic today to focus on how health IT marketers can help, and what topics are affecting patient advocacy especially from a marketing standpoint. I want to even start even a little broader and just talk through from your standpoint.

This first question, I invite you to give us a little background in terms of some of the specific things you have done involving patient engagement, patient advocacy. I’m curious just where you see the greatest opportunities in patient advocacy right now.

Linda Stotsky: Well, I was and I am a patient advocate. My mother was involved in a long term care facility and I was her patient advocate 15 years ago. My daughter recently went through thyroid cancer and [inaudible 00:05:21] her patient advocate and on the third instant my youngest son has a disorder called neurofibromatosis 1. I’ve been his patient advocate for the last 19 years.

I think I’ve been a patient advocate over several different types of care, aging care, disorders, as well as disease. I’ve got a pretty good personal stake in patient advocacy.

Jared Johnson: How has that affected the way that you’ve approached it?

Linda Stotsky: Well, of course it’s personal to me. Of course I’m passionate about it, and I’d like to do something to affect the change and make sure that the patient’s voice is heard as we progress healthcare forward.

Jared Johnson: For those who aren’t as familiar just with the concept of patient advocacy itself, what are types of things that it involves that you were doing on a regular basis?

Linda Stotsky: Well, patient advocacy obviously involves the voice of the patient within navigating the healthcare ecosystem and understanding the challenges, understanding treatment planning, understanding diagnosis and also care management. There’s a need for patient advocates, in continuing care settings in the hospital as inpatients as well as outpatient. There’s a large continuum of patient advocacy.

I think it begins with just understanding medical jargon and also understanding what’s at stake in terms of decision making. Also helping patients when they’re more vulnerable and they do not have the ability to speak up regarding choices in care, also medical and/or coordination of care.

Jared Johnson: I see. It sounds like a very active role that you play in patient advocacy itself. Where do you see the greatest opportunities in it right now and how has patient advocacy evolved recently?

Linda Stotsky: I think right now we have an enormous opportunity in the industry to make sure that first of all that patients can access their medical records, that they understand the information that’s involved in medical jargon, and they are informed about disease management choices.

I believe that IT system vendors have an opportunity to include the patient’s voice in design discussion, development [inaudible 00:08:11] and educational material. I think there are opportunities for patient participation more so today in national studies regarding health issues, [inaudible 00:08:23]. I see a lot of advisory boards enlarging to include patients. I believe that patient advocacy will grow tremendously over the next five years or so.

I think a large need for advocates who can navigate the healthcare ecosystem and have an understanding of regulatory compliant and somewhat of a clinical understanding so that they can understand the critical steps in a process and become a valuable asset to those caregivers of patients.

Jared Johnson: Let’s talk about that clinical side of it for a moment, if we talk about the health information systems that are involved. You mentioned patients being able to access their medical records. What from a clinical side do we need to know to help patient advocacy?

Linda Stotsky: Well, I think from a clinical standpoint we have to realize that we can’t just incorporate a patient portal and expect all patients to understand results, lab tests, and medical choices and information. What we have to do is we need to customize the information so that it fits the needs of the patient.

It needs to fit the needs on a literacy level and also in terms of just regular living room language, if I can use that term. In other words when we exchange information and provide information to patients such as lab results, we need a standard way to improve our translation of those results so that the patients understand what they mean.

A good rule of thumb is [inaudible 00:10:23] test what they are to the patient. In other words HDL and LDL could be low and high cholesterol. There’s a really simple way to communicate information to a person in a way that they can understand what this means. Right now I think we’re connecting results with patient portals, but what we’re doing is we’re missing that critical step of translating the information in a way that the patient can understand and take those values forward to make changes in their lives.

Jared Johnson: I see. How does health IT play a role in that specifically? What parts of this process of helping the patient understand their own medical records. What role does health IT play in that?

Linda Stotsky: Well, I think health IT is a big player in this in that there are enhanced patient lab results which allow providers to include personal remarks with the results. They can also be grouped by date of service. They can also be changed in terms of the name of the results so that low and high cholesterol instead of HDL and LDL would be high and low or hemoglobin A1C will be translated into a sugar test. Things of that nature.

We can also provide gauges so that a patient can see just in a normal bar graph that shows highs and lows so that they can see an interpretation of this in a visual way, and they can better understand how they can make changes, or what this information means.

Jared Johnson: Well that sounds like it leads to some of the challenges which was my next question was, what do you see as the greatest challenges in patient advocacy right now?

Linda Stotsky: Well I think that I’m going to go against what I just said. But I think the greatest challenge is in turning requests into actionable change within the healthcare enterprise. Again, while we advocate for patient portals and patient access to medical information, we have to make sure that the information we’re translating and the information we’re providing can be used in an actionable way.

The ability to be heard is a huge problem right now in healthcare for patient advocates. We’re a long way from a two-way relationship between patients and providers. We are not sensitive to patient values and input, we need actionable strategy to embrace the patient and their family as partners both in the diagnosis and treatment planning, and also in future care management. I think there’s a need for more advocates and more patient navigators in complementary settings such as long term care, rehabilitation, pediatrics and hospice.

Because sometimes we’re brought into the mix, Jared, when the situation is already adversarial. We’re promoting or we’re advocating for the patient just during that adversarial confrontation. It becomes somewhat of a confrontation. What we need is a greater effort by the medical community as a whole to include those patient voices and patient advocates as part of the conversation before it becomes adversarial.

While a lot of hospitals are hiring patient advocates right now, I’m not so sure that this is the way to go about it because once you have a financial stake in the employee, there’s somewhat of a conflict right there in their advocacy. Can they be candid? Can they be forthright? Can they speak without retribution? It’s a tricky mix. I think we need to continue to challenge prevention, how to prevent actions before they occur, and how to fully rectify a situation without becoming adversarial so that the patient experience is improved overall.

Jared Johnson: Is there any resistance to the growth of patient advocacy that you’re seeing from any particular side of healthcare? Is it providers or is it those working on the health IT solutions themselves? Is there resistance from any particular group there, and if so, what do we do to help overcome that?

Linda Stotsky: I think we need to listen. I think the two-way conversations are somewhat muted on the listening side. I know for myself I was recently with my daughter. She underwent some surgery. While we were in the recovery room, it was just . . . It was unbelievable to me how . . . just how frustrating it was as a patient advocate and as her biggest supporter . . . what a hard time I had to get things done and to get people to listen to me. If she had been by herself during this experience, I’m sure that her health and the time that she spent there would have been compromised.

I think that specifically we need a larger conversation between primary care and secondary care. We need care coordination to be a broader part of our strategy in improving the quality of care delivery and we have to improve these communication channels, so that when we have conflict and we have situations that need a tighter coordination and more of a communication, we need to be listened to.

I find that very frustrating myself because after this experience with my daughter I reached out to some of the C-suite at the hospital and some of these people were actually friends of mine. I basically [inaudible 00:17:02] the situations that happened, and the gaps, and the critical components that I felt were missing. I didn’t even get an answer. These are really good friends of mine.

I shudder to think about the patient or the patient advocate that doesn’t have these inroads and who doesn’t have the ability to write an email or doesn’t have the ability . . . doesn’t even know the email address. I think that what we need for the healthcare organizations to listen to these situations and include patients in these two-way conversations.

Jared Johnson: You bring up a couple of really good points and obviously the need for the entire healthcare system to evolve. I’m going to quote part of an interview that you gave with Health Care IT News, it was earlier this year. I believe you were asked something about how patient advocacy has changed over about a 14 year span and you said during that 14 year period, “I hate to say this, but not much has changed in terms of care coordination, even with our technology and the systems we use today.”

I don’t know if you recall the context of that quote. I’m wondering what changes you would like to see in the next five years. You were starting to touch on it here just a moment ago, but if we had to put a time period on it and say, hey in the next five years what changes would you like to see?

Linda Stotsky: Well, one thing I would like to see is a greater communication channel. We don’t communicate well past the physical walls of a facility. When we’re exchanging information, many times critical information is incomplete and incomplete information results in medical error and hospital re-admission.

I believe that we need to tighten up both the micro level and macro level. We need to look at our protocols. Many times patients experience infections due to incomplete protocols at the facility level. There need to be a macro level integration with the facility, and a micro level improvement in the clinical guidelines and protocols within our EHR systems and clinical decisions for platforms.

These protocols, they don’t need to interrupt or provide additional noise or alert [inaudible 00:19:37], but rather intuitively recognize gaps and improve these transitions to general reminders and checklists. I think the difference in care protocols from one facility to another causes critical gaps. These gaps can be accompanied by physical changes in the patient such as delirium, psychosomatic changes, pain and decompensation before the re-admission cycle.

It has been 15 years since I experienced this with my mom and with her gaps in care. Yet when I accompanied my neighbor’s father through his transfer from an inpatient facility to a long term care recently, I saw the exact same behavior resulting in the same infections and ending with his re-admission to the hospital.

I like to quote people now and then and I saw a quote from George Bernard Shaw that says, “The single biggest problem with communication is the illusion that it’s taking place.” I think we’ve come a long way with technology, but sometimes we find it difficult to initiate a conversation. This may be as simple as picking up a phone in certain situations. Within the next five years I truly like to see a better way to open up the communication channels especially during transitions of care.

Jared Johnson: Well, I think you set a very high bar and I think it’s wonderful because I think we need voices like yours out there for those types of things to happen. I’m wondering just from a marketing standpoint, what marketers can do to help. Are there certain things from their standpoint, we’ve talked about on the clinical side and on the health IT side, If we talk about marketers in particular, how can they help within their organizations to actually advance patient advocacy?

Linda Stotsky: Well, I think marketers can do a great job in terms of opening dialogue channels. Starting conversations on Twitter and social media, holding chats. Patient advocates want companies to listen to them. I think marketers can engage patients and advocates, where they live and what they do to interpret and move the conversation forward so that both pharma companies and medical and healthcare organizations can hear the necessary feedback from the industry, and the insight that can help affect the change.

We need to engage advocates, patients, hospitals, providers and payers in larger conversation, and that’s where marketing can really help. Rather than using these marketing channels to have one way conversations or just for blogs, I think marketers need to receive feedback and buy in from consumers and patients. Share patient’s story, be a good listener because this critical component is sometimes missing from the conversation.

I think marketers need to get in touch with grassroot conversations to connect the voices that improve patient care. It’s really risky to open up the conversations to unknown remarks, yet as marketing professionals, I think this is the only way that we as a community can improve upon the model we have today. Marketers can be really extremely influential patient partners and move our efforts forward.

Jared Johnson: Well, we have time for our fun little bonus question here at the end which is, if you could join any music group or rock band for a day who would that be?

Linda Stotsky: This is such a great question because I don’t even think I can narrow it down to one. I think that I have two favorite rock groups that I would like to join for different reasons. I think that I’d like to join Bruce Springsteen and The E Street Band because of the energy. I love them, I love the music. I love to be a percussionist just doing something in the background. I don’t care what it would be. I would just love to be on stage with them.

Then I’d like to also be with The Stones only because I’ve loved them since I was 12. They’re a bunch of old rockers and I’m an old rocking groupie as well. So I would love to be part of their gig for a night.

Jared Johnson: Sounds like you’ve had a lot of fun in the music scene and that’s actually the first time we have a repeat answer. That’s the second time we’ve heard Rolling Stones as an answer there. I ought to keep track of this and start tallying them up. That’s awesome. Well, do you want tell everyone one more time again how to reach you if they’d like to get a hold of you?

Linda Stotsky: Sure. You can reach me on Twitter @emranswers. Also I’m linda.stotsky on Skype and on Gmail.

Jared Johnson: Awesome. Well, Linda, we really appreciate you taking some time out of your busy schedule here and being with us on the podcast. Thanks again.

Linda Stotsky: Thank you so much Jared. Thanks for having me today.

Jared Johnson: Well, until next time, I’m Jared Johnson and you’ve been listening to The Health IT Marketer podcast. Do us a favor, subscribe and tell your friends, and let us know how we’re doing. Leave a comment on the show page which is Any of the programs you’re able to leave a comment and let us know what you liked or what you didn’t like or what you would like to hear more of, and what you’d like to hear not so much of.

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