Digital Health Talks - Changemakers Focused on Fixing Healthcare

Healthcare Leaders Share the Keys to Empowering Patients

Episode Notes

HealthIMPACT Live Presents: Healthcare Leaders Share the Keys to Empowering Patients for a Better Patient Experience, Outcomes, and Improved Communication 

Original Publishing Date: Nov 15, 2021

YouTube Video: https://youtu.be/nS8hoiU6RTA

Entering the healthcare system isn’t like getting on a ride at Disney World, where you can get on, expect your experience to be managed, then get off and be done. It’s more like a trip to a foreign country. There will be a missed reservation, a museum might be closed when you get there, and you might have some good and some bad experiences. It can be overwhelming! You don’t understand the language, but you can be more empowered to ask for what you need, see maps or guides based on other travelers' experiences and take the advice of the locals. Cris Ross, Pamela Arora, and Ed Marx, three industry-renowned healthcare executives, share insights from their recent unexpected experiences as patients. Their strategic decisions on how to deploy technology at their health systems have affected millions of lives. Despite their long experience in healthcare, their recent patient journeys revealed friction points in data sharing that urgently need to be addressed and game-changing insights on how to sync information sharing with patients during their patient journeys. Join us as we discuss concrete steps to empowering patients to engage in their care, and how health systems should adapt to more empowered, communicative patients. HealthIT tools including patient portals, chatbots, CRMs, and precision analytics can be incredibly vital tools on patients’ healthcare journeys but only if patients are empowered and engaged in using them. 

 

Cris Ross, CIO, Mayo Clinic

Pamela Arora, SVP and CIO, Children's Health System of Texas

Shahid Shah, Publisher and Chief Editor, Medigy.com, Moderator

Episode Transcription

Shahid N. Shah: Welcome health impact audience we've got a jam packed the next 30 minutes for you to talk with and some folks that you guys already know as luminaries in the field, I mean, these are CIO's that you've heard speak at many places and.You know, basically pontificate about a great things that that all of us should be doing as health system executives, but we wanted to choose a different angle to talk to them about their patient experience. As a CIO in their own or related hospitals and health systems, so this discussion really is about why and how we put patients in the driver's seat and get some really game changing lessons from the CIO's who know what it what's like to put technologies front and Center in front of patients, but now, with that patient view would they change anything, what would they suggest that senior executives do about technology and how technology is applied from that patient angle so we've that we've got Pamela and Chris to talk to us i'm going to have Pamela introduce herself first then we'll go to Chris and then we'll just jump into a quick conversation Pamela.

 

 

Pamela Arora: Excellent I've been a CIO at several other organizations, but the last 14 years CIO at children's health in Dallas and I'm currently serving as the SVP of strategic technology. I've seen a lot of growth from one campus to three, we continue to grow it's a growing market migrated in EMR build data centers and then migrated to the cloud so there's been a lot of change over time and

necessity is the mother of invention and you see a lot of virtual these days as well, especially in light of coven but, at the beginning ofjust one Corbett hit the US I was with a children's health team touring best practice hospitals on the west coast gathering ideas to future proof, a new tower we're building.

 

As well as some future facilities and I checked into my hotel after a full day of touring and my primary care physician and left me an urgent message to phone her on her cell phone anytime. Not the kind of message you want to get from your clinician I not only had breast cancer, but an aggressive cancer and I needed to see a specialist soon. I had no idea, the prevalence of breast cancer, I had no markers or family history for it, but one in eight women one in eight of your female friends family and neighbors or colleagues will have breast cancer.Thankfully the treatment has come so far, I saw precision medicine and action.

 

On the team of talented UT self help some ut Southwestern clinicians over the last year and a half, I say they saved my life and they get guided me through my tour of chemo infusions multiple surgeries radiation and reconstruction I witness firsthand the caring and I am grateful and humbled.

 

 

Shahid N. Shah: awesome you know and and we're pleased that you're with us here and, unfortunately, that you had to go through that experience but we'll put a positive spin on it and get as much of it experience that experience embedded into healthcare information technology at your both your role where you are.

 

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Shahid N. Shah: And, of course, teaching our other health system executives as well, Chris tell us a little bit about yourself and your role at Mayo and then your story, just like our panelists.

 

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Cris Ross: Sure thanks Shahid, and thanks for helping back for having us here i'm Chris Ross and i'm CIO at Mayo clinic.

 

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Cris Ross: i've been at mail for about eight years.

 

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Cris Ross: How I came to come to the patient side was in July of 2018 I was diagnosed with Stage Three colorectal cancer.

 

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Cris Ross: went through the normal course of treatment, which was chemotherapy than radiation and surgery.

 

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Cris Ross: I was declared cancer free in March, I had a subsequent surgery a couple of weeks later, and I was back on the job in June of 2019.

 

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Cris Ross: And you know I forgot about cancer for quite a while and then in.

 

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Cris Ross: January of 2021 I was diagnosed with a recurrence of colorectal cancer some cells that you know we're in the same sort of area so again back into the fight.

 

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Cris Ross: chemotherapy radiation, a little bit different chemotherapy a little bit different radiation, this time and then surgery on July 15 of this year, I spent a month in hospital afterwards and.

 

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Cris Ross: i'm happy to be looking forward to getting back on the job next week.

 

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Cris Ross: But both have been interesting journeys, to say the least.

 

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Shahid N. Shah: yeah, to say the least, as you said so in this case panel will start with you tell us about any friction points of friction points.

 

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Shahid N. Shah: At the hospital and health systems that that you visited that maybe did not have to have the friction and maybe you would have missed if you were not a patient so did you notice certain things.

 

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Shahid N. Shah: And we're able to say to those around you hey, why is this working this way and would patients have been able to say the same thing if they didn't have your role and your background and experience as a CIO.

 

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Pamela Arora: Absolutely um first i'm going to start with just one thing that worked right that I don't think patients take advantage of.

 

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Pamela Arora: The patient portal, I am I was always a huge fan, but now that i've been a frequent flyer patient.

 

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Pamela Arora: I am a tremendous fan of the patient portal, and it really isn't the window into your electronic medical record and it's invaluable, you can find out about your labs that you just took before the clinicians even get back with you right away.

 

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Pamela Arora: As far as appointment, you can request appointments or you can actually schedule appointments and locate find out the location.

 

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Pamela Arora: I went to an academic medical Center and things were scattered two different buildings and that patient portal, I was always pulling it up to make sure I went to the correct building for this particular area.

 

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Pamela Arora: messaging your care provider actively engaging in your care this window into the emr is invaluable and so many patients do not take advantage of it so.

 

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Pamela Arora: that's something that works right and people need to use it more some of the things that I saw challenged.

 

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Pamela Arora: One was the data flow among different caregiver organizations, I mainly saw this when I was getting a second opinion and working with a couple organizations and my primary care.

 

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Pamela Arora: physician, as far as my history, and in this case, it was a classic case of three different emr difficulty transferring information and, in this case it wasn't facts but i'm sneaker and that.

 

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Pamela Arora: it's just it's sad that it still has to take place, but I will say this is something that all the organizations have to come together and to fix it tends to be non glamorous work so sometimes.

 

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Pamela Arora: A patient, making the statement that this is important to them is going to make a big difference it's The one area that had me screaming through all this.

 

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Pamela Arora: second area of challenge was refined that workflow if you think about.

 

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Pamela Arora: Any kind of change, sometimes it trips up the electronic medical record that is geared to certain things you have complex care, a lot of different parties are engaged will for i'll give one example.

 

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Pamela Arora: In one surgery, I had a port, but the system didn't quite know it, so they were sticking me with a needle when I didn't need to, so I would have passed on that if I didn't have to.

 

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Pamela Arora: And then, with one of my surgeries they took the port out and I arrived in the system thought the port was still there, so.

 

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Pamela Arora: Those are just little hiccups, but I think the key that any patient should know is that if they see something that doesn't make sense you're in organizations that want to deliver the best care possible.

 

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Pamela Arora: And if you're vocal about some of these challenges, they will get fixed, but at the same time you want them fixed now relative to your own situation, so you need to be vocal along the way, and.

 

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Pamela Arora: The other comment i'd make is my fiance's had recent cardiac surgery, and I think that the notification along the way with the surgery now i'm talking about a patient family member looking after their loved one.

 

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Pamela Arora: I thought that the ut Southwestern did a reasonable job, but I will offer there's so many areas where text message notification can be interjected into the workflow processes.

 

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Pamela Arora: and allowing people to select their preferences and how they're notified along the way, as far as when one of your loved ones are having surgery but i'll stop there, the list is long, but.

 

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Pamela Arora: Overall, I say great experience as far as the care delivery, but every health system has opportunity with the patient experience.

 

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Shahid N. Shah: yeah I love it, and in fact pamela as you were talking about that point of being vocal.

 

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Shahid N. Shah: Maybe i'd love for a Chris for you to jump in and kind of like take that.

 

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Shahid N. Shah: and add to it and say how would one be vocal like there is there a process is there a procedure.

 

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Shahid N. Shah: Is there a technique that you would say I mean you have both of you, when you are within your organization's knew what happens at a hospital.

 

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Shahid N. Shah: So you had better insights on what maybe to expect what not to expect so that's one area Christmas to say how can one be vocal and at the same time, talk about I know that you and ED marks are working on a book.

 

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Shahid N. Shah: That might basically help patients understand this process a little bit better.

 

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Shahid N. Shah: And so you can you're welcome to weave in what you're working on that book in terms of allowing patients to be more vocal and then we'll have pamela jump back in and comment on what you say, as well, so tell us about how to be more vocal and did you find friction points.

 

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Cris Ross: Sure, well, I think, being vocal is a perfectly legitimate thing for a patient to do, but I would say in general.

 

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Cris Ross: The thing that ED and I have talked a lot about is that all patient journeys, the success of them really depends on what attitude.

 

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Cris Ross: The patient takes, how do you want to get through the system, so I would say, for example, your question about friction points.

 

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Cris Ross: I think every patient should expect that there's going to be friction points.

 

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Cris Ross: A health journey is not like a ride a Disney world where you know that you're going to get on the beginning and you're going to get off at the end and everyone's going to have a good experience.

 

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Cris Ross: it's like a trip to a foreign country.

 

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Cris Ross: there's going to be a missed reservation there's going to be a lousy restaurant that you go to maybe somebody's going to get sick along the way, but you're going to be disappointed to the museum you wanted to see as close.

 

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Cris Ross: You know that's more like what a healthcare experience is going to be it's not curated it's not perfect it's not scripted it's an adventure along the way.

 

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Cris Ross: Hopefully, with insights gained by you and your clinician along the way, that will help adjust your care that certainly happened for me so.

 

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Cris Ross: I don't want to excuse hospitals and say go ahead and deliver a lousy patient experience, far from it, but I also think it's important for patients to understand.

 

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Cris Ross: That they need to be part of the decision making process, they need to take on board the fact that they need to be resilient and understand that there's going to be, you know things that happen along the way.

 

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Cris Ross: With that in mind, I would heartily second pamela's endorsement of patient portal holy smokes the Mayo clinic patient APP was my companion through to long journeys.

 

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Cris Ross: And you know, like pamela's experience we have open notes.

 

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Cris Ross: So I can see the full surgical notes, I can see the full report from the radiologists I can get everything.

 

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Cris Ross: In that can be overwhelming for some patients, some people might look at and say I I don't understand this language is complicated it scares me don't know what it means you know what for some patients don't look at the portal details.

 

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Cris Ross: Right, do you keep track of where your appointments are going to be and make sure that you know what questions you want to ask and what anxieties that you want to express.

 

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Cris Ross: My certainly had a fantastic journey through Mayo clinic twice, because it was an integrated system, I didn't have any of the problems of data being exchanged from multiple systems and so on, but even within that wonderful system, you know I certainly had friction points.

 

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Cris Ross: There was an occasion during my care when I needed to have a nasal gastric tube removed if you've ever had a nasal gastric to put in, you know it's, the last thing you want it's a pretty bad thing it's like a Punch in the nose and then choked and gag.

 

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Cris Ross: I didn't want to take two about until I was sure that the underlying cause had been addressed and.

 

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Cris Ross: I had a resident on a Sunday morning who announced that the Protocol, said that the tube should come out and I simply disagreed and we went around and around and I finally said to the resident i'm sorry we just don't have a meeting of the minds here.

 

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Cris Ross: i'm a patient here and I just don't consent to have the to remove this is what I would want like before I had the to remove sorry if i'm getting too gross of an example.

 

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Shahid N. Shah: Perfect if you will.

 

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Cris Ross: But it's a place where honestly I needed to stand up and say no i'm not comfortable with you doing this, I understand your viewpoint but I disagree right.

 

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Shahid N. Shah: that's perfect and then, when you look at that comment that pamela then so you mentioned being vocal.

 

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Shahid N. Shah: I think, Chris added very nice he did that to say it's about your attitude I mean if you feel like everything's going to be perfect and then even the slightest thing goes wrong everything looks bad.

 

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Shahid N. Shah: If you feel like you have no control over anything, then you let everything happen to you, which is also bad What would you suggest.

 

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Shahid N. Shah: That hospitals and health systems, especially the executives should do in terms of.

 

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Shahid N. Shah: I don't know training is probably a bad word educating patients is probably a bad word, but what should be what should patients be told on the way in.

 

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Shahid N. Shah: That hey if you see this it's okay to talk about it hey it's okay to question your nurse and your doctor you're not going to be insulting them, for example, if somebody says something to you and you don't understand.

 

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Shahid N. Shah: ask someone else to explain it you won't be insulting the nurse or you won't be insulting the doctor, because a lot of this is kind of like a paternalistic environment when you go to a hospital.

 

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Shahid N. Shah: And you're feeling like well they know what they're doing I shouldn't ask right or I shouldn't question well how should that training occur from the senior executives on down when they're bringing patients into the hospital for these complex procedures pamela.

 

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Pamela Arora: Oh, very good question and I do agree with Chris comments that it really is a journey to another country.

 

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Pamela Arora: You want people to have a flexible attitude i'd also offer that when I say vocal.

 

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Pamela Arora: I don't mean that people are like in your face mean about what they want, because honestly when you go into health systems, these are people who really care and they're doing their best for you.

 

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Pamela Arora: On this so from that standpoint, but i'm relative to permeating the entire organization from the senior leadership to the front lines.

 

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Pamela Arora: That emphasis on patient experience is very important i'm going to echo what Chris just offered is somebody might love the portal.

 

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Pamela Arora: Some people may just need to be aware of the portal and then they'll love the portal and then there's other people who that isn't how they want to get their information.

 

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Pamela Arora: i'd offer that my father, who is close to 90 now would not want his information to the portal.

 

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Pamela Arora: But certainly others in his family will want to translate but i'm so that whole aspect of really reading what that patient family wants because we're a pediatric organization so it's about the parents as well, but what that patient family wants.

 

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Pamela Arora: In those instances that comes from the top, and I will say that at children's health we have initiatives that really get into all aspects of the patient experience and there's still a long way to go.

 

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Pamela Arora: relative to awareness, I do think that sometimes people aren't aware of what they can be doing with their data and in those instances.

 

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Pamela Arora: When data doesn't flow do they want the data shared all of that kind of information as an education process and it needs to happen, where the patients that in that chair journey.

 

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Pamela Arora: We do a lot of that with our medical records department, where patients tend to reach out when they need some of the information and they want to share it and other.

 

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Pamela Arora: Enterprises, but as far as that aspect of educating the patient, I think the more places you do, that the.

 

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Pamela Arora: more likely patients are going to take advantage of it and relative to notification and workflow I will also offer.

 

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Pamela Arora: That at ut Southwestern they were surveying every time I had a clinic visit every time I had a surgery.

 

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Pamela Arora: The organizations, want to hear from you, and I think as a patient sometimes people don't realize that then information is RAD in some action is taken, based on the feedback that they give.

 

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Pamela Arora: Certainly, if you have positive things to say, the caregivers need to hear that the organizations need to hear that so they don't break what's working well.

 

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Pamela Arora: But they also need to hear the areas where you'd like to see something different, whether you're used to alexa at home and they want to be able to use alexa in their hospital room too.

 

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Pamela Arora: Difficult difficulties getting a ride if they have some challenges there there's a lot of things that you can give feedback to to the health systems on and they sincerely look at it and make change behavior based on that.

 

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Pamela Arora: You have cost just to see if Chris has something else to add.

 

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Shahid N. Shah: As Chris Tobin, but I wanted you to elaborate on one key area, and that is, you know what most of us when we fly it's it's it's to a point where we're sick and tired of it, but when the.

 

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Shahid N. Shah: The flight attendants get up and tell us the safety video right basically here here are all the things that you should expect from this plane if it goes down you're going to do this and you know.

 

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Shahid N. Shah: It put your head down if you see something if everybody else, putting your head down you put your head down that kind of safety instruction seems to be something that.

 

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Shahid N. Shah: hospital should do when you walk in right you're about to go through this pathway.

 

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Shahid N. Shah: Should you be told here's what you're going to expect we want your input if that happened if you do, that a children's because I know at a children's hospital you're more likely to use that because patients literally don't know.

 

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Shahid N. Shah: like children don't know and their parents don't know what to expect So what should a.

 

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Shahid N. Shah: almost like a flight safety video or flight safety instruction look like pamela from your perspective and i'd love for krista kind of like add on to that and then maybe basically teach.

 

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Shahid N. Shah: senior executives about how they should educate and then basically after that we'll talk about what would you do with that education after you did, and if people gave you information so tell us what would a safety video look like for patients, based on your experience.

 

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Pamela Arora: I will say that there have been educational videos that when I was in the hospital room relative to my condition, there was very detailed videos that you could put on the TV and it marked, whether you watch them or not, which is.

 

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Pamela Arora: very helpful relative to the health systems, knowing that you consume that information.

 

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Pamela Arora: The other aspect of it is how you make it kind of seamless they end up knowing when they need to know so relative to our portal.

 

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Pamela Arora: We also put a wrapper around it and you can actually GPS from your home, all the way to the floor of the clinic into the clinic itself.

 

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Pamela Arora: Those kinds of mappings of what people need to know when they need to know what similar to when you're driving down the highway and you get guidance from your GPS that you're taking your right hand turn if it tells you a mile early it's not helpful.

 

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Pamela Arora: Like when you want to know it that's when you want to know it so relative to what that video what that.

 

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Pamela Arora: orientation could look like similar to whether people like text messages and the portal everybody's going to be slightly different and you need to meet the patients, where they live, learn work and play.

 

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Pamela Arora: So you have to kind of look at those health journeys and I will say there's probably some 8020 rule aspect of being able to get a good corral of patients with the approach we try to leverage our.

 

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Pamela Arora: A wrapper around our emr portal as much as possible, because a lot of our patient families like that, as a location, based on the feedback that we've been getting but.

 

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Pamela Arora: You have to recognize every patient is different and it's Okay, and in some cases they might be in that 20% where the feedback is going to make a difference around some of the other alternatives, but it really does depend on your condition.

 

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Pamela Arora: Certainly my cancer journey was different than chris's and.

 

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Pamela Arora: If you're there to get a different type of procedure done it's going to make a difference on what that orientation video looks like there's some basic stuff on where to park and that sort of thing and then there's the other aspect of your particular clinical care journey.

 

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Shahid N. Shah: that's great advice and Chris if you can talk a little bit about you know you as you experienced it, you went you did this experience like twice in two years right, so you went through it once and then you came back.

 

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Shahid N. Shah: Most of that was probably consensus because it was only one year apart, but as you think about that, when you came in, you probably forgot certain things you would want it have been reminded of.

 

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Shahid N. Shah: should be safety video quote unquote include things like here's what you can do with your patient portal here's how you should speak up.

 

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Shahid N. Shah: How much of the so i've seen certainly the videos and things like that, as Pam was mentioning about the procedure you're going to go through.

 

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Shahid N. Shah: But really the rest of the experiences left kind of as an exercise to the reader, as it were, and how much Chris do you think.

 

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Shahid N. Shah: We should tell senior executives that hospitals and health systems, about how to enunciate elucidate explain what people should expect.

 

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Shahid N. Shah: And then, when they don't get what they expect that there is a way of telling through surveys and things like pamela mentioned, to be able to then take that and do something with it any comments on what what senior executives could and should do.

 

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Cris Ross: Sure, so I would say, you know I don't speak for me on this particular issue because it's not my portfolio i'm a CIO but I certainly intend to be.

 

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Cris Ross: provocative and mouthy in the appropriate kinds of ways to get from here to there.

 

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Cris Ross: You know, I think that we have examples all around us that are could inform us think about old commercials for products or services, I happened to come across a manual for a car.

 

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Cris Ross: From you know the 1950s and the manual said nothing about the driver or the passenger it was all about the maintenance of this physical device the whole.

 

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Cris Ross: thing was how does this product work.

 

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Cris Ross: The car companies now become lifestyle companies look at some of the ads that are coming out from places like Toyota that one, as it was run incessantly during the Olympics about a car that's your friend and plays karaoke and drives for you.

 

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Cris Ross: I think the the car manufacturers have understood that they can cross that sort of you know, fourth wall, as it were, and not just talk about.

 

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Cris Ross: The car and the mechanics, but they can talk about the the driver experience and who are you what what lifestyle, do you have and what kind of car do you want to have.

 

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Cris Ross: I think it's going to be okay for healthcare systems to break that fourth wall and kind of meet the patient, where where they're at.

 

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Cris Ross: So I would say in my personal experience I got these really nice patient appointment guides.

 

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Cris Ross: Both on the portal and occasionally they got printed out for me, for whatever reason, and you know they told me that I needed to fast and what I could do the next day, and what to expect and what this procedure was all about.

 

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Cris Ross: And I felt pretty you know pretty informed, but there were some other places where there was some hits hits and misses right.

 

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Cris Ross: Where I think more transparency with the patient could be a better thing so, for example in this last surgery that I had to remove the cancer as a complicated surgery.

 

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Cris Ross: There were six teams involved in the surgery, but the lead surgeon did a really great job describing everything and I met with all of the surgeons, who are going to.

 

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Cris Ross: operate on the and they all explained everything to me, and yet when it was done, I came out of that surgery with nerve damage.

 

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Cris Ross: Because of where the tumor was located and what was required to take it out and I I don't have use of my left leg and i'm in the process of rehabilitating my left leg, and now I guess i'm an advocate for the disabled.

 

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Cris Ross: Because i've experienced what it's like to be disabled for a couple of months.

 

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Cris Ross: It would have been helpful to me if at some point, even some more dire potential outcomes had been more fully described to me.

 

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Cris Ross: And i'm sure that's scary to a clinician I got a lot of dire you know outcomes, I was well understood the possibilities of all of many things that could go bad, but even with that it would have been helpful to take even a step further, to describe some potential outcomes.

 

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Shahid N. Shah: yeah and when you think about that as a potential outcomes will could there be either technology or other education material about what has happened with.

 

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Shahid N. Shah: Similar patients your age your gender your past aka your current occupation and that kind of thing is to say, you know here's a 400 that were done in the last two years.

 

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Shahid N. Shah: Here is the outcomes that they have seen now that gets a little tricky because I think what what pamela was saying, which is.

 

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Shahid N. Shah: How much is too much information and so when you think about that would you err on the side as a patient, would you err on the side of getting too much information.

 

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Shahid N. Shah: Assuming that there is a group of loved ones around them, or would you say it's better to give them all, only the stuff that they need, and if there's not a family or a group around them don't give them more than that what's just some your opinions there.

 

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Shahid N. Shah: I think you can go first Chris and then we'll bring in pamela.

 

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Cris Ross: Sure, so I really like what you talked about about the kind of village surrounding the patient.

 

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Cris Ross: that's a theme that's been pretty important to me and it's going to show up in this book that at night right which is.

 

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Cris Ross: How much people do depend on that support structure for lots of stuff.

 

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Cris Ross: Look, I think it's going to be impossible, you know I just sort of complained a little bit about my circumstance, I think it's going to be impossible to provide a guide to everyone that covers everything.

 

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Cris Ross: Number one number two I think it's the case that part of this has to be what can the patient absorb and what can they express about their ability to absorb things.

 

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Cris Ross: You know, some people are easily overwhelmed with too much data or too much feeling is it serving them to load more information or more anxieties on them Probably not.

 

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Cris Ross: So I think you know clinicians are in a damned if you do and damned if you don't kind of position so again, I think the viewpoint is the patient.

 

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Cris Ross: From my experience and observing the way the healthcare system works patient ought to make a decision, the best they can, about what is their flavor of journey.

 

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Cris Ross: What will be the automatics that guide them through do they want to know everything do they not want to know everything do they want to take a you know cancer i'm going to crush cancer.

 

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Cris Ross: journey which a lot of patients take where they're going to take a more passive, one which is you know the trust the clinicians and i'm going to see what comes out the other side, I think it really is incumbent on the patient to decide.

 

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Cris Ross: You know what their adventure is going to look like and what kind of attitude, are they going to bring into it as best they know they certainly can change their minds, they go.

 

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Cris Ross: But I think the more you're true to yourself, better chance you're going to have to get the right kind of information at the right time.

 

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Shahid N. Shah: yeah and pamela when you think about extending our Chris was saying, with respect to.

 

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Shahid N. Shah: What to tell a senior executives about how to change the hospital health system how, when you look at it in terms of the patient.

 

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Shahid N. Shah: relationship, it seems like hospitals like to have a relationship with the patient, they don't know what to do with everyone else around them.

 

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Shahid N. Shah: Is that it is that a reasonable statement number one and number two What could we do going forward to say look guys the patient, aside from hipaa there are real.

 

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Shahid N. Shah: Actual hipaa problems i'm not saying that somehow what i'm about to say is easy from a regulatory perspective, but if the fam family members are always like when my mom recently had her cancer surgery, she was not alone at any time.

 

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Shahid N. Shah: Ever right at the hospital meaning, not just hospital staff, but every every day there were one or more family members.

 

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Shahid N. Shah: And the hardest thing was for the family member to tell what the next family member was coming to take over the shift was so that became a struggle, because the hospital.

 

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Shahid N. Shah: Perfectly reasonably did not know who was a family member who wasn't but that also seems like something that could be solved if we assume that a caregiver kind of like that mini village that Chris said, is a norm in many cases.

 

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Shahid N. Shah: And that that could hospitals and health system executives do something about that pamela where is that is that going well beyond what Hippo would allow.

 

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Pamela Arora: um no actually patients can indicate who they want to have their information shared with so I don't think hipaa is a barrier there.

 

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Pamela Arora: The key is is the patients in the driver's seat there as far as determining who's going to get to see the information about what's taking place at that point.

 

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Pamela Arora: On i'd also offer that relative to pediatrics if you look at how that patient experience is designed, there is the assumption that there's a parent.

 

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Pamela Arora: That needs to know about the decisions that need to be made, I would say, in the case of my nine year old father, I think there's.

 

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Pamela Arora: Our daughter or another family member that is part of that care group as far as that support structures, so I think when we look at adult care, I know that the.

 

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Pamela Arora: emr is have these capabilities so some of its a workflow aspect of building it into the workflows of allocating those people educating those people on the use of portals and different tools.

 

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Pamela Arora: I am going to also mention that relative to what Chris was offering he would have liked to have known certain outcomes before having gone through the procedure.

 

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Pamela Arora: I saw Dr phil i'm co host with me to speak at a health impact conference.

 

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Pamela Arora: and his wife had breast cancer now you could offer Dr hamada is a very sophisticated not only clinician but also he understands technology quite thoroughly.

 

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Pamela Arora: And in any case I would i'd offer is that, in time, I think the data around the statistics, with your particular condition.

 

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Pamela Arora: is going to get more aggregated some of the emr vendors are aggregating the information across all these different health systems.

 

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Pamela Arora: and in doing so that's not only going to be helpful to the physicians that are actually doing their research, the bed to bench to bedside kind of research we wanted at the bedside or clinic side, where it's actually being received by many patients.

 

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Pamela Arora: there's forks in the road, I think that it will only be for the physician, so it also be for the sophisticated patient that wants to know the stats and I will offer that a ut Southwestern.

 

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Pamela Arora: They were incredibly patient with me asking a litany of questions and when they give me an answer i'd say.

 

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Pamela Arora: You don't have to give me the exact step, but I wanted to drip directional statistic on us, so I can make my choice in those forks in the road, I think that people do want some data to marry up with what is recommended and.

 

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Pamela Arora: In fairness to health systems that whole data be aggregated across all of the health systems.

 

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Pamela Arora: that's only really starting now and some academic medical centers where they had some agreements across academic medical centers but getting a bigger denominator.

 

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Pamela Arora: starts to make that data more relevant and if you have a unique condition there's more likely that they have something that's a meaningful percentage if they have more patients that actually fit in that window i'll pause there I am curious if Chris agrees with me on that.

 

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Shahid N. Shah: yeah and Chris definitely add on and do answer a panelist question about that, if you agree, but maybe take this one step further, for our health system executives, if you do open up and accept.

 

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Shahid N. Shah: Patients being more vocal because we want them to be you accept accept the idea that you're going to train them a little bit more educate them a little bit more about what experience to expect.

 

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Shahid N. Shah: When they have input, though, what what are you supposed to do, because it's it's one thing to not ask and then not deliver, but if you ask for vocal input and then don't deliver things might be worse so.

 

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Shahid N. Shah: Just to take us home in a couple of minutes just tell us about this and then we'll conclude for this for this afternoon.

 

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Cris Ross: So when I talked to my clinician colleagues at mail.

 

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Cris Ross: I don't think we have a shortage of vocal patients.

 

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Cris Ross: They are you know come in with viewpoints about their care and so on NAO focuses on complex and serious disease, so people have are highly engaged justifiably so, and we've seen examples nationwide of where vocal patients, you know, in the coven.

 

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Cris Ross: pandemic, for example, are you know, asking for particular medical cures, which have become popular which are not clinically appropriate well, what do you do with the patient who insists on receiving those kinds of unapproved and unproven therapies.

 

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Cris Ross: I think this is a tough job for clinicians you know we've even seen cases where there's been lawsuits right to force a clinician to deliver a certain kind of therapy, so I think the idea of it that.

 

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Cris Ross: there's probably a lot of people who we could encourage to speak up more.

 

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Cris Ross: there's probably a lot of people who could encourage to become more engaged in their health care.

 

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Cris Ross: Especially when you think about issues around non compliance for chronic disease, where people are not taking their medications or they're not eating or exercising in alignment with what their treatment program should be like.

 

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Cris Ross: So I think there's a possibility of focusing in on on those folks who might be silent.

 

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Cris Ross: or who might be disengaged with their health, in a way that's that's not as positive, I don't know what the answer is for that.

 

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Cris Ross: There is a clinician at Mayo Dr Victor montori worked on, I think, called shared decision making, for a long time, and it was very simple things he was a.

 

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Cris Ross: He would often one of the artifacts to be used was a simple piece of paper with a sort of dots on it that would show the number of people who have this disease and take this medicine.

 

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Cris Ross: and have a heart attack or is the small little number of red dots at the bottom and people who didn't take the medicine, you know there's a lot more red dots.

 

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Cris Ross: Very simple sure, but perhaps that's the kind of thing that's necessary to meet that non compliant patient in the right place so anyway i've read about folks like that.

 

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Cris Ross: Rather than the others how the hell systems handle those vocal patients I think we're learning how to do it.

 

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Cris Ross: I think we're learning how to be more like lifestyle companies like the car companies when we cross that line and are willing to talk to the patient about what they want, what are their goals and so on, I think that's a wonderful thing.

 

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Shahid N. Shah: yeah and I think, maybe just in the last minute that we have.

 

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Shahid N. Shah: If eh ours were assumed to not be the hospital's system of record.

 

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Shahid N. Shah: And instead we're the patient journey management system, as it were, when they were at the hospital, starting with and I love the krista point that you made, which is.

 

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Shahid N. Shah: That don't focus on so ask them some very simple questions to know whether this was going to be a vocal patient anyway.

 

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Shahid N. Shah: Maybe you kind of quote ignore not not in that not in the same way, but you don't have to focus on the ones who are going to be vocal anyway.

 

 

Shahid N. Shah: You want to hit the maybe quiet majority of 5060 70% to give them special attention because they're going to be silent and they will actually get worse outcomes if you don't walk them through the thing so maybe it's the opposite don't focus on the vocals at all focus on the ones that aren't going to be speaking up because of that silent majority. One will have the most common experience, but when something goes wrong they're the least likely to speak up and maybe that's what we should be teaching our executives to do is giving them techniques to find those that will not speak up and raise their ability to do so, just in the last 30 seconds or so Pamela, what do you think about that idea and then we'll let Chris Center.

 

 

Pamela Arora: it's an interesting idea I do think in some you always want to encourage the patients, and I think the clinicians really try to reach out to encourage patients to engage in their care back to my comment around statistics that possibly can be fed back to a patient it's probably those that are not converted, the ones that are disengaged that to Chris's point would be influenced the most if they can see well if you continue down this path kind of like a Christmas Carol here's what the outcomes could look like.

 

But relative to the people who do want the data, the ones that are vocal I will say that, as they see forks in the road I love the work that's been done at Mayo as far as figuring out how to engage them and get the information to them along with those forks in the road. I think the ones that are already engaged they're probably going to consume it more readily and in those instances we have opportunities but um anything we can do to make the patient experience so that it feels like it's where they live, learn and play and work it's going to be much more positive and they've made a lot of stuff in that direction, I found so um it's been encouraging to me where you can even get a shot at home, where it's on a timer and the next day you get this shot and you don't have to even go back and for a follow up that normally you'd have to be back in their walls for but i'll pause there and give it back to Chris.

 

 

Shahid N. Shah: yeah Cris the last 30 seconds that tell us a little bit more about the book itself and what if any input, would you like from the health impact audience we've got a bunch of smart people what could they send you in terms of emails or interact with you about some ideas, you may want from the Community if anything.

 

 

Cris Ross: Well, and I would love to hear from everyone that would be great I think our viewpoint, was to simply take our experiences.

 

And with the helpful input from our publishers and editors into a book for patients, as opposed to a book for health systems so we're pivoting a little bit and doing all the rewriting but our focus has been to encourage people to think about what kind of attitude. They want to bring into their health journey, how are they going to use their friends and families around them, how are they going to engage with their care team, and then we want to kind of draw the curtain back a little bit about why our health system so complex. Why are some things difficult that look like they should be really simple. But she eats I love your idea about the EHR being the patient journey map I don't think it needs to be either or I think it can be the patient system of record, plus the patient journey map I love the idea of having some sort of journey map that can be edited by the patient. That helps them understand how they're going to get through their care of the there's a powerful idea that's the kind of thing we should be looking for.

 

 

Shahid N. Shah: Fantastic great advice Pamela, as usual, we've had you on multiple times, Chris value on multiple times you're always welcome back.  So hopefully you never have to go through the experience that, either one of our esteemed speakers has gone through, but if you did you'll get some lessons here be a little bit more vocal where you can pay attention and have a great attitude, which will hopefully drive you in that comparable to a foreign country visit more than a more than entertainment type of visits so great advice as you're done with that I'll turn it over so we can hit our next session at the health impact.

 

 

Pamela Arora: Thank you.