Re-cap of my visit to the NYEC 2013 Digital Health Conference (Day 2)

Jim Messina, President Obama’s 2012 re-election campaign manager was the keynote speaker for Day 2 of the conference and his talk was entitled “Lessons Learned from the 2012 Campaign and How They Apply to Today’s Healthcare Challenges”.

I thought that the title of the keynote was really interesting because sometimes working in this field is very much like running a campaign, and different players have different needs and different interests. Mr. Messina’s talk centered on how data was used to drive decisions for the election. He talked about how using data, he was able to map who the undecided voters were and how things like email blasts were analyzed and tinkered with in terms of timing, tag lines, fonts etc. (reminds me of A/B testing). He also talked about how the same principles can applied to healthcare, and I wholeheartedly agree. How can we design programs and initiatives without truly understanding who our clients are and what they need/want? How do we know if we are making an impact, without any data?

Mr. Messina also talked about the broken IT procurement process, which has gotten a lot of press lately, (a very insightful post by David Blumenthal of the Commonwealth Fund, on procurement can be found here: (http://www.commonwealthfund.org/Blog/2013/Nov/A-Tale-of-Two-Procurements.aspx) and how it needs to be amended to allow for entrepreneurs to sit at the table. Indeed, government and healthcare are both dynamic fields with changing needs and the system processes that are apart of them must adapt as well.
Mr. Messina spoke about Enroll America, a nonprofit whose mission is to help Americans who are uninsured get and stay insured. He talked about the idea of local influencers on social media and the influence that family and friends have on decisions people make. In healthcare, this is especially true as the question of “Hey, do you know a good doctor for (insert X,Y or Z)” always seems to come up. Also, for the most part, we don’t live in isolation, we are all part of a larger community. He spoke about how important text messaging over email can be. True, many of us have really full inboxes or on occasion get spam mail, but that isn’t the case for text messages. Additionally, there is that extra personal element of direct contact that is associated more with text messaging or a phone call, than just email alone.

10 –minute speakers came next and this was one of my favorite parts of the conference because what the speakers spoke about were tools of our present and our future in healthcare which include, interactive and visual experiences, new interfaces and hardware, and 3D printing. I thought it was really great to see physicians and researchers take the lead in using technology to better understand and develop tools that could help providers and patients alike.

Virgil Wong , CEO of Medical Avatar, artist, technologist and medical cognition researcher at Columbia University, was the first presenter and his presentation was entitled “Real Patient Engagement Through the Visual Arts”. Mr. Wong talked about how art, cognitive psychology principles, and mobile health tools can be used to help people use health IT to learn, cope with, manage and really understand conditions that are affecting them and this can lead to a reduction in claims costs as well as re-admissions.

I think that the concept of a medical avatar is great. I’ve thought a lot about that when thinking about patient education and the patient portal. Having a model that looks just like you is as personal as you can get. It was really compelling when Mr. Wong talked about smoking and brought up an image of someone’s face and you could see that person literally age right in front of you via the effects of smoking. It’s hard not to be moved by watching a visualization of that. Mr. Wong also brought up a Star Trek reference, where a patient is shown a 3D hologram of what is going on inside his body. It’s interesting and exciting to me how close we are getting to a Star Trek reality, teams are already working on a tricorder (Scanadu, Jack Andraka’s team). We are now used to this very visual world (tv, tablets, internet) and it makes sense that patient education should move in that direction as well, pictures and videos to reinforce text and speech. A picture is definitely worth a thousand words, and the ones produced by Mr. Wong’s team are definitely better than the ones I have drawn 😉 in the past.

What also struck me about Mr. Wong’s presentation as well as the ones that followed is the emphasis on art and the creative process. Medicine is an art and a science, because when it comes down to it, medicine, healthcare, government, companies are all about people and we are not strictly numbers nor are we ephemeral artists all the time. I actually think we are at our best when we combine creativity and technical/scientific knowledge in pursuit of a better world.

Second Talk was given by Dr. Glenn Green, Associate Professor of Pediatric Otolaryngology at the University of Michigan and it was very simply entitled “3D Printing”. I am a huge fan of 3D printing and the larger Maker movement having been to Maker Faire, NY3DP and NY Tech Connect Life Science events, so this talk was right up my alley.
Dr. Green’s talk was about creating customized medical tools and devices (surgical scaffolds, guides, prosthetics, organs) based on a patient’s imaging data (CT scans, MRI, even smartphone selfies) with a quick production time (within 24-48 hours). He told the story of a young boy who had severe respiratory issues and how he was able to make an airway device customized to fit the patient (who did very well afterwards). Dr. Green also showed hydrogel scaffolding laced with stem cells that was used to build an ear.

I actually was able to have lunch with Dr. Green later on that day as he serendipitously sat down at the only open chair left at the table I was sitting at. We were able to discuss things further. The cost of customization is heavy on the technology and expertise side, but the cost to actually make a product is about $10, so it’s not necessarily something that would be mass manufactured. Another important point that he made was that, yes prototype patterns can be emailed anywhere around the world, but it’s really important to have biotechnicians and engineers , people with technical expertise on board to ensure quality.
I think it would be pretty incredible if every Level I hospital surgical suite had design/pattern tech and technologists as well as a 3D printer. Talk about personalized medicine, in a time frame that caters to a patient’s needs.

Third talk was given by Dr. Heather Evans, trauma surgeon and Google Glass explorer from Harborview Medical Center.
Dr. Evans talked about her experiences using Google Glass. During her talk, she used Glass to connect with her partner who was in the midst of a hernia repair surgery. As an audience member we could see everything that was in his field of view and it was a bird’s eye view into the OR.

Google Glass has been especially popular with surgeons because of the hands-free element (so no field contamination). Dr. Evans cited many possible uses of Glass for surgeons (and in my opinion, docs who work in emergency or critical care). 1) It can be used to as a teaching tool for those unable to make it to the OR or who are off-site, both attending physicians and residents/students. Glass can facilitate off-site communication between an expert and a trainee performing a procedure (central line catheter insertion was what was demonstrated at the talk). It could also be used by a patient to teach and evaluate providers and students via video playback from the patient’s perspective. (During the talk, Dr. Evans showed a picture of a procedure dummy wearing Glass to illustrate this). 2) It can be used as a procedure or operative note and this makes sense because you can accurately document via video what you are doing, while you are doing it. 3) It can be used in communication and decision support in the field of telemedicine. 4) It can also be used to document a patient’s journey (video /photo diary).

Admittedly, there are limitations, inclusive of cost, battery life, and potential for legal implications. Additionally, Dr. Evans remarked that it’s like always having a rear view mirror with you (which can be +/- for some people) and audio is affected because of bone conduction. However, I think that the benefits will outweigh the risks and am interested in seeing how other medical explorers are using Glass especially as the technology evolves.

The first breakout panel I went to on Day 2 was called Better Healthcare by Design: How Data Visualization, Behavior Change Techniques and User-centered Design Can Create Successful Products. Panelists included Katie McCurdy User Experience Designer and Researcher at Katie McCurdy User Experience Design, Steven Dean, Partner at Prehype, Dustin DiTommaso, VP of Experience Design at Mad*Pow and Molly Lafferty, Senior Interaction Designer at Huge.
First off, would like to commend Dr. Wen Dombrowski for her work on curating a panel on design in healthcare. Sometimes people think of design as just the exterior of a product, but it is so much more. (Wrote a post a while back on design in medicine: https://charlenengamwajasat.wordpress.com/2013/06/08/design-in-medicine-steam-power/)
I think that the panel did a great job of defining was design is and what it isn’t. Design is about making something “desirable, viable, feasible”. Design is not just things, it is also systems. Design is about visualization and process.

The panel spoke a lot about developing a service blueprint and a visual diagram of a process, that maps stakeholders and the roles they play, subsequent steps, current and future states. It’s about looking at data and all its ins and outs. How do people use it? What can we automate? How can we identify patterns, especially in healthcare? And the purpose of such visualization is to provide insight, and highlight where the inefficiencies and targets are.

They also spoke about the design journey, or journey of a visit in a process or a product. Design can have you follow the designer’s intent or your own intent. This was interesting in relation to healthcare and technology as it relates to the environments in which we find ourselves, what frustrates us or makes us comfortable, and customization of tools and experiences. They also spoke about the pattern of that journey and its relationship to the iterative pattern that we see in entrepreneurship and innovation, design, test, re-design. Wash, rinse and repeat with incremental and sometimes disruptive changes and subsequent effects.

The next panel I attended was called “Power to the People: Taking Blue Button Nationwide”. Panelists included Christopher Bradley, CEO of Mana Health, Alexandra Cohen, Director of Product Management at NYEC, and Lygeia Riccardi, Director of Consumer eHealth at the office of the ONC HIT.
The talk centered on how the federal government as well as NYS is working to engage consumers in healthcare. The overall framework is based on the concept of the “Three A’s”: Access to information, making information Actionable, and changing attitudes about the role patients/consumers play in relation to their health. The Blue Button initiative is a part this, as it is a way of enabling patients to access, store, make portable and use their health information.

What struck me about the panel was when Ms. Riccardi talked about the Blue Button as a symbol for a movement for patient engagement and patient empowerment. I think information is powerful, knowledge is power, and gaining knowledge involves access to information. Blue Button and the efforts involved in SHIN-NY are definitely going to make waves in our health system.

Christopher presented the current working proto-type for the Patient Portal for New Yorkers that Mana Health is helping to build. I worked several months on the portal and with Mana Health in terms of product development, clinical expertise, strategy, and I ran social media, so it was interesting for me to see what stage both the company and the portal are in. Also, I was interested in feedback on the portal as the doctor part of me is always in the habit of checking up on patients and projects, it’s just part of who I am. (Here is a link to my thoughts on the portal and why I was involved, written the day we submitted the rfp: https://charlenengamwajasat.wordpress.com/2013/06/05/my-thoughts-on-the-upcoming-nys-patient-portal/)

During my time at the company, I made several lists of what features and elements I wanted to be part of the portal. I placed a lot of focus on design and was inspired by the design philosophies of Steve Jobs, Jack Dorsey, John Maeda, Cleveland Clinic, Kaiser Permanente and the greater NY design community: tiles vs Excel spreadsheet, addressing special needs populations (visual/audio issues, languages to reflect NY’s diversity, health and tech literacy, senior populations, parent and caretaker needs), importance of mechanisms for communication (customer service, consumer feedback, provider needs and time constraints), considerations for aesthetics, simplicity and overall marriage of form and function, and building something for the present and the future (adaptability elements-mobile, Google Glass, future platforms). Language was also incredibly important to me as well, most of my words started with C: communication, comprehensive, collaboration, community, connected world, clinical input, commitment to the people of New York etc, but the philosophy behind the design also included words like fun, intuitive, engaging, useful.

I think that NYEC has done a really great job in terms of participatory design with their public voting initiative during the design challenge, feedback given at demo day, focus groups, and feedback that was given at the conference. I really loved how many hands went up in the air during the Q+A section of the panel (yay for engagement).
In looking at the current proto-type, I’m glad that they added in more of the customizable features that I wanted, in particular being able to move the tiles around to fit your preferences, and the ability to alter font for security purposes (smaller in case you are in a public place) and for visual reasons (bigger, because you lost your glasses). (What I had wanted was a one-click mechanism like that used in Microsoft Word where you select the size, and poof! It’s done). I also noticed that the guide bar was moved to the left side rather than on top (feedback given during demo day) and that the Blue Button was added. The notes tab is in a great place, and I really wanted a notes section because I really encourage people to take notes, write down questions, and chart their own progress/path (sometimes you forget what your doctor says, or it helps to jot down a food diary etc). In terms of the proxy view, I really wanted a color coded aspect to it, so say you are managing your mother’s, your own, and your daughter’s records, it is perhaps color coded so you know exactly which chart you are accessing, typing info into. I’m glad that they also took my suggestion of enabling an emergency access flag to a chart view because I was concerned, what happens if your person is unconscious, how do I as a doc in the ER, access your chart ? The other consideration is handling situations where people have similar names.

During the Q+A section, a really valid point was brought up by an audience member. Is it too simple, for say a user who is a healthcare provider, or how will the portal adapt as a person becomes more sophisticated in their knowledge of their health/conditions. I think that the customizability of what you see and what you want to see addresses that to a certain extent, and also potential plans for specific needs patient portals.

I am really excited for when the portal launches, likely first quarter of next year. NY will be the first state to ever pioneer such an endeavor. I do recognize though that there are several challenges. First, I think to a certain extent the public is a little bit skeptical of government, healthcare and web sites in light of recent events. Second, patient portal engagement on both the patient and provider side traditionally has not been very high. Mostly tech savvy consumers, sports enthusiast have used them in the past. Recently, someone asked me quite directly, how the portal would help them, as a relatively healthy person (Answer: organizing disparate data points aka avoiding the runaround, use it when you need/want to, helps in taking care of loved ones, being part of the patient empowerment movement, ability to give feedback and spur on innovation in health IT via participation). Third, jump from pilot stages to full blown statewide implementation. A lot of testing is going on for sure, but yes it could potentially be a little buggy in the beginning especially if millions of people access it at the same time. My advice to the startup would be to focus on building out core design and infrastructure elements and focus less on growth or expansion to other $tates or $ystems. Focus first on your commitment to the people who got you to where you are, and who ride the subway with you every day. Also, I’m hoping that people understand that the portal release is like the release of a new software or device, and that things will get better over time, especially with their feedback which is wholeheartedly welcome, because the portal belongs to the people. It is made by the people (NY-based company, NYEC, I’m a native and lifelong New Yorker, feedback from New Yorkers) and for the people. You all own it and I look forward to the day when I use version 346.0

In looking at the road ahead for New York and digital health, I think about two things in particular that were said at the conference. The first was by Mr. Halvorson, “Make the right thing easy to do”. The second, by Mr. Pietri, that “New York has no greater concentration of capital, talent and politcal will.” I believe that our pool of ideas and people will be able to make a real difference in the lives of the people of New York and I look forward to the journey.

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