Did you ever walk into a doctor’s office & then have to fill out a long paper intake form with the same information you’ve filled out multiple times before (name, date of birth, insurance etc)? Or notice that your doctor is writing notes on pieces of paper that remind you of your days in school? Did you ever see someone carry a pager around? Was that person wearing a white coat?
You can bank and pay for your Etsy/Amazon/Target/Apple “gotta have that now” stuff online. You can Skype with your family who lives thousands of miles away. You can order a pizza & know the exact moment it comes out of the oven. You can interact with @Oreo, @TacoBell @Grumpycat online.
So why can’t you easily see your health charges online? Why can’t you get a quick text or email that you’ll be seen by your doctor in 10 minutes? Why can’t you Skype with your doctor?
1. Until recently, your doctor has probably had little to no training or exposure to the world of digital health.
If you do a quick and dirty poll and ask the MD’s in your life what it is, you’ll likely get a ?-mark look or an answer related to apps, electronic medical records, or meaningful use. How can that be? Don’t most doctors have smartphones & tablets? Yes, a lot do but their use in a professional capacity isn’t 100% yet.
Until recently, there were no courses in med school or noon lectures in residency related to health information technology, wearables, personalized medicine, medical apps etc
It’s hard to use something or integrate it into your daily life if you’ve never heard of or really used it before.
2. Time is an issue.
Doctors focus on taking care of patients. I’m thinking more about your symptoms and how you feel than the medium I’m using to document your visit.
Then for docs that are tech-inclined, there are literally thousands of apps & products out there & it’s time consuming to mine all of them. Plus, patients are individuals and some things are not one size fits all.
3. Inertia (Thankfully this doesn’t apply to everyone)
It exists. Healthcare is a complex system with many layers and many players. I once read that it takes 15-20 years to make big changes happen.
My two-sense: We are rooted in tradition, yes, but the main tradition we uphold is caring for patients. This entails providing the best care possible & embracing new technologies, thought frameworks, workflows that will give the people (we swore an oath to care for) the best possible care experience.
Do you remember when video game consoles first came out? They weren’t in color & there were very simple & basic things you could do, and not much else? Fast forward to the consoles & games of today which provide an Imax or in some cases a virtual reality experience. Big difference, right? Medicine is slowly making its way from version 1.0 to version 2.0.
Remember how pricey version 1.0 of any tech is? Then 5 years later version 5.0 is as pricey but 20x better. That’s kinda how it is too. Thing is though, version 1.0 is deeply entrenched & is usually pricey to remove and you have to train people to use the new product & there will definitely be speed bumps along the way.
5. So-so to bad first time experiences
Have you ever tried on a dress or a suit that clearly was made for someone else but you tried to make it work anyway? Well…certain kinds of tech weren’t originally made for doctors (actually made for billers) & so the initial experience wasn’t so great.
Or another way of putting things is, if you took a bite out of something & it was not what you expected, bitter even, would you be more or less likely to take a second bite?
6. Your individual doctor may not be the main decision maker when it comes to choosing & using tech.
Doctors use the tech tools that are available to them. As a student, doctor-in-training, or even as a supervising physician, you tend to use the technology that is already in your clinic, hospital, center & don’t really play an active role in choosing the tech.
7. Classic battle of innovation vs. regulation
The actions of doctors, healthcare providers, which include nurses, physician assistants, medical assistants etc, (only wrote doctors cuz I am one & for the alliteration) affect lives. We tend to favor things that have been tested & researched & that don’t do gross harm. Thing is, innovation pretty much implies the unknown.
Ok…so these are the issues. Now for some good news.
Times are changing. I’ve seen initiatives in regards to digital education, collaborative innovation, and health policy changes (government push to go digital). In addition, chips are getting smaller and faster and technology is becoming evermore accessible cost-wise. Organizations & startups are taking a hard look at what hasn’t worked & where a lot of the friction/pain points are, in order to come up with solutions that make the healthcare experience better. Last, there has been a push by patients, by the general public, for change to happen & trust me, it will. It’s just a matter of time.
Harlem is a place that I know very well. I spent 5 years there as a young medical student at the Sophie Davis School of Biomedical Education at City College. It’s like a second home to me, and I go there all the time, to meet with academics, friends, for great events, and to eat at my favorite neighborhood spots.
I love going to neighborhood spots like Flor de Broadway for jamon con queso on pressed cubano bread and great conversation, Santiago’s Deli for the Santiago Spicy -the sandwich that got me through 3 am anatomy dissections- and some old school Goya malta, to La Tropesienne on the East Side for the baguettes and croissants. Newer places like Vinateria, Marcus Samuelsson’s (formerly of Aquavit and author of Yes, Chef!) Harlem restaurant Red Rooster, Minton’s Supper Club and the Lido are putting out great food with great ambience (and jazz!-so bring your dancing shoes). And then there are the classics, like chicken and waffles at Amy Ruth’s or collard greens, fried chicken and mac and cheese at Sylvia’s.
Harlem has a rich history of food, culture, art, music, and dance. It is the place that captured the hearts and minds of people like Zora Neale Hurston, Countee Cullen and Langston Hughes. Today it’s capturing the hearts of a new generation, but what always seems to resonate with me as I walk around the neighborhood is the electrical energy of a vivacious, yet earthly and indomitable spirit, and above all, a real sense of community, acceptance and belonging, regardless of where you come from.
Harlem has always been a place that hustles and bustles with the comings and goings of makers and creators, and now it has broad-based wifi! Harlem is now home to the Harlem Business Alliance which supports small businesses with classes and information, Harlem Seeds and Aquaponics, which teaches young people about sustainable farming, the Harlem Garage, a new co-working space for entrepreneurs, the Harlem Biospace, a life science incubator and wet lab space on the West Side that seeks to broaden New York’s scope in the field and to instill a love of science in the next generation of thinkers and creators, Kiiln NYC will be the first all female founder incubator in NYC and act as a step-out life science incubator on the East side, the Zahn Center at CUNY, which focuses on hardware startups, and of course, Columbia University, home to a Health Tech Assembly (which I am a member of), a community of mentors and students working to change healthcare via innovation and entrepreneurship.
I had the privilege of attending Let’s Talk Harlem, hosted by Square (at the legendary Apollo Theatre, a place where Stevie Wonder, Michael Jackson and Lauryn Hill have all performed), for a town “square” on local businesses. I’ve been a fan of Square for a long time, because I believe that it democratizes commerce the way Twitter democratizes communication, and it does so in a simple, elegant, and intuitively designed way. I think that there is something incredibly powerful about an individual being able to achieve his/her dreams and tools and knowledge play a key role in making that happen.
The panel discussion, which was moderated by Square CEO (and Twitter Chairman) Jack Dorsey, featured Marva Allen of online bookseller Hue-Man Bookstore, Erika Dilday, executive director of the Maysles Documentary Center, Seven Brown, founder of Harlem Skin Clinic, and Emmanuel Pena, co-owner of Astor Row Cafe. Congressman Rangel (who had a few cameos) was also in attendance.
Mr. Dorsey asked the panel about business plans, hiring, how to grow a team & customer acquisition. In regards to business plans, the panel talked about having a vision & a roadmap, but noted that the plan can change all the time (or even 17,000 times). In hiring & growing a team, Marva Allen said, “Lead from a position of passion…and meet the staff where they are.” When it comes to customers, the panelists talked about customer service, authenticity and creating unique experiences. “They buy you”- Seven Brown. “We are the product” -Emmanuel Pena.
Mr. Dorsey also asked the panel about challenges, regulation & ambitions. The inefficiencies of government interactions came up as well as the need for accountability. Taxes as well as rising infrastructure costs & rent also came up. Ms. Brown talked about the importance of analytics for your business and deciphering your wants vs those of your customers.
In regards to ambitions & what needs to happen for small businesses & Harlem, Ms. Dilday talked about organizing a Harlem film festival & Mr. Pena talked about creating checklists for each type of small business, in terms of forms, agencies to contact, and protocols that could help a small business owner better navigate the complex government system. I think that this is a great idea, & sorely needed; it would streamline complex processes & help small businesses save time, money and energy -all of which they could put back into their businesses.
Mr. Dorsey mentioned that one of the things that Silicon Valley has is a culture of support & mentorship. Ms. Allen said that in Harlem there is a lot of collaboration, but what’s needed is more formal training. I agree, formal training in a milieu of community & passion would definitely take things to the next level.
During the Q+A portion of the talk, the topic of gentrification came up. Harlem has definitely attracted a lot of big box stores in recent years, but how do we keep it from becoming just another run of the mill place with stores, how do we preserve that sense of culture & community that exists? How do we nurture entrepreneurs, small (and large) businesses? I don’t have all the answers, but I think that talking about what’s happening is a start. Getting people together to share ideas & experiences is a start.
Square has had town squares in other cities, including Detroit, St. Louis and New Orleans, places where people are staying to really dig in, cultivate their gardens & revitalize communities. There’s a grit to that, and a love of place, people and community that I respect and admire.
Technology is definitely helping to foster the growth of cities. I always think about how we can we use technology to help us do things we already do, but in a seamless way, or a way that enhances our experiences. However, tech, although fast becoming ubiquitous, is only a tool, it is the people who are the heart and soul of companies, and the heart and soul of our communities.
I think that there is something to the local experience of knowing your neighbor. Knowing where your food comes from and who makes it. Going back to our roots and re-discovering old recipes & small batch techniques. Having respect for a craft (and for the crafters) -be it a cup of coffee, a wooden chair, or a woven rug, you can tell when something is made with love and passion.
During the talk, Mr. Pena talked about being an entrepreneur, and “if you can’t find the answer to something, you make it.” Square’s birth comes out of that same vein, and so does that of a lot of small businesses. It’s about having an enterprising spirit, a dream, and working towards bringing what you want to see in the world to fruition, despite obstacles that may stand in your way.
Christopher Reeve once said, “At first, dreams seem impossible, then improbable, and eventually inevitable”. Congressman Rangel touched on immigration & how it is people with hopes & dreams who leave a country, & that “small business is what people coming to.this country think they can succeed in”. This is evident if you walk down almost any street in NY, people not only bring their dreams with them, they bring who they are, and who they want to become. Additionally, their children get a front row seat to entrepreneurship & what it means to make an honest living and to work towards your goals.
At the event, attendees were given Square kits (which were in the shape of what else? SQUARES!) We were also treated to small Squares that held the thinner version 2.0 dongles. I really liked the little squares because they fit easily into your purse or the pocket of your jacket/shirt or jeans. Pull it out, plug it in & boom, get started in 5 minutes. The packaging was very well designed, it tells you exactly how to use it in easy to follow instructions & tells you the cost up front. I also noticed how well they economized the space, every word, picture, seems to have been placed with care. The larger Square kit had little pamphlets about Square Register & also financial analytics (very helpful in terms of keeping track of bestsellers). Opening the kit was reminiscent of opening a new tech toy or opening up packaging for a new phone rather than opening up something just for work.
I think that the simplicity of Square, its affordability, its design in regards to form & function (i.e. quick cash deposits so a business’ working capital isn’t tied up) and the fact that it is device agnostic are all boons. Anyone can start a business with a tool that may actually be more platform than just a singular tool. I’ve seen artists use it, bakeries, kids selling lemonade, and from the buy side, I’ve used it before to buy face cream, soap, artisan food, and even used it to buy John Mayer’s “Born and Raised” CD at his CD signing at the Reed Space on the LES.
Square has also launched Square Market, where vendors can offer their goods to a wider market, and most recently, Square Cash, a service where you can send & receive money via e-mail.
Now in talking about Square, I would be remiss if I didn’t mention @grannyny, who recently appeared with her grandson on the Today Show. As an avid tweeter, giver of hugs (both in-person & virtual), cheerleader & tech startup advisor, she’s proof that it’s hip to be Square at any age and that it’s the people in our lives & the people who help run our businesses that make them what they are.
Harlem will always have a special place in my heart. In terms of what it will become in the future, collaboration, communication & the preservation of a sense of community will be key, and as Mr. Dorsey (aka @jack) says, let’s talk, and let’s keep talking.
- use open data to design research projects and outreach initiatives (let’s collect data and really find out what we need to address, what resources we have so we can have better resource allocation, and let’s see if our initiatives are actually working)
- learn from each other by working on such projects
- be ambassadors of digital health (a lot of people don’t know what it is and how it could help them, let’s get out there and show people from patients to healthcare providers)
- act as innovation leaders and scouts (there is a world out there, and I believe in the bi-directional transfer of information. we can learn from each other, developing world-> developed world and vice versa)
- act as bridges to people who want to get into the field, learn more about the ecosystem in New York (so many bright and talented people that I’ve met want to get into the space, but they aren’t sure how) or as sounding boards for entrepreneurs
- engage in hands-on work (testing technologies out, talking to parents, seniors, hospital systems about needs/feedback, or what about take your developer to work day at the hospital? Or Computer Science 101 for doctors?)
- teach in academic settings
- act as idea agents and agents of change (what if we used facial recognition technology or fingerprint technology now available on smartphones to login to accounts/secure data? what if we changed how we do things, how we talk about and what we expect when it comes to healthcare?)
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: http://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: http://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.
After attending last year’s NYEC digital health conference, I really looked forward to this year’s conference, especially in light of all that has happened in the field of digital health over the past several months. Main themes for this year’s conference were Big Data and Analytics, Interoperability, Patient Empowerment, Outcome-based care models, and Tools for the Future. (Some of the speaker decks can be found here: https://speakerdeck.com/nyec and http://nyehealth.org/events/digital-health/). Keynote speakers included George C. Halvorson, Chairman of Kaiser Permanente and Jim Messina, President Obama’s Deputy Chief of Staff (2009-2011) and 2012 Re-election Campaign Manager.
Mr. Halvorson spoke about the importance of data and its ability to improve care, science, and save lives. He spoke about how data can cut disparities in half and how web care will be everywhere, as on-site care in the home will be the future for patients. I agree, I think that data is very important. We need access to it in order for us to study trends, areas of need, and make informed decisions as to care as well as resource allocation. In thinking about data though, we must consider sources, integrity, methodology of collection, storage and security, as well as its visualization and the tools we use to make sense of it all. I think that digital health will enable consumer empowerment and a trend back to care at home. Portable tools and Internet access will allow patients and providers more mobility, convenience and accessibility.
What I thought was really great about Mr. Halvorson’s speech was that he also addressed public health and provided concrete actionable steps that have led to outcomes. For example, he talked about how walking 30 minutes a day, 3x a week can cut diabetes and depression in half. He also addressed socioeconomic determinants, and talked about how it’s kindergarten vocabulary and being read to that can most affect whether an adolescent goes to jail. I think it says something about an organization when its leadership talks about health in a global, communal, and whole-listic way…
After Mr. Halvorson spoke, David Whitlinger, Executive Director of the NY E-health Collaborative spoke about what’s coming up in the next year. He talked about the SHIN-NY(Statewide Health Information Network of New York), which will connect New York’s 11 regional health information networks and make it easier for healthcare providers to access patients’ data (with their consent) in a secure and easily accessible way. He also spoke about future hackathons for health, open API’s (application programming interfaces, which are often 3rd party libraries that let developers/coders access other tools/programs and use them in their own applications, I like to think of it as borrowing sugar from a friendly neighbor and using that to make your own cake), and a digital sandbox that will enable developers to develop health-related apps. Last, Mr. Whitlinger spoke about different companies in the NY ecosystem that are working on different facets of digital space, as well as the upcoming NYS patient portal for New Yorkers, which will roll out in the first quarter of 2014, and allow the people of New York state access to their medical information, for about $3.50 per resident (quite a $teal).
In my eyes, what the SHIN-NY, portal, and open API’s do is enable providers, patients, and developers/designers to have access to data and be able to use it for their own personal health and potentially to develop programs/initiatives that will help others. It also addresses the headache and run around of trying to gather disparate data that comes from different care providers, hospital systems, patient generated information etc. As a native and lifelong New Yorker, I am proud that my home state is taking the lead in pioneering this and as an MD, I have an idea of how impactful this will be.
The conference was separated into 2 days and there were multiple breakout sessions. I attended the ones that related to Tools of the Future, Data, Patient Empowerment and Design. On day 1, I attended “Predicting the Future-The Re-imagination of Healthcare and What’s to Come” and “Freeing the Data: Driving Value from Using Clinical Claims, and Device Data”.
Predicting the Future Panel speakers included: Steven Krein, the CEO of digital health incubator Startup Health, Eric Gertler, the EVP of the NYEDC, Maria Gotsch, President and CEO of the Partnership Fund for NYC, Ryan Olohan, National Industry Director, Healthcare, at Google, and Todd Pietri, General Partner at Milestone Venture Partners.
I thought that the panel was really interesting and reflected the people involved in digital health (from government to startups to venture to large companies like Google) as well as the magic and the movement that is happening in New York. One of the things that was said at this panel was that we are currently in a golden age of entrepreneurship here in NY, where it’s never been faster and cheaper to start a company, and we have a government here that is willing to help (Check out the amazing projects and initiatives at http://www.nyedc.com and learn about Governor Cuomo’s STARTUP NY initiative here: http://startup-ny.com/ -operate a business tax free for 10 years in the Empire State). I think that private public partnerships are important, because I think it takes a diverse group of people and diverse mindsets to tackle the complicated problems that exist in healthcare. Problems are great opportunities for nimble and innovative startups.
Ms. Gotsch talked about the importance of domain knowledge and clinical input. Granted, I may be a little biased here lol, but I think that domain knowledge is important because developing tools in isolation from the people who will use them often leads to systems that do not have great product market fit and can also lead to inefficiency. Additionally, she mentioned the NY Genome Center (www.nygenome.org) and the intersection of genomic and clinical data. It’s interesting how science is spurred on by new tools and technology is one of them, allowing us to sequence genomes and help us better understand ourselves at levels we weren’t able to before.
Mr. Gertler spoke about New York’s DNA of industry and commerce. Indeed, New York has long been a financial center and commerce has been a part of our identity and our history. It is my hope that it will become a digital health and life science capital and I can see it happening as more people come to NY not only because it’s a diverse and exciting city but because of what’s happening here. At the time of the conference, one of Mr. Pietri’s portfolio companies, MapMyFitness exited in an acquisition by Under Armour.
Mr. Olahan talked about how Google invests in `10x ideas and how the time is now [for healthcare]. Google’s expanding venture into healthcare and life science has been really interesting. Mr. Olohan mentioned that there are thousands of videos on Youtube on health topics, put up by both professionals and ordinary people who want to share information, and share their stories. Indeed, most people who look for health information will start with a search engine (aka Dr. Google). Google has also looked at flu trends and recently announced Calico, which will look at aging (and genomics).
Freeing the Data panel speakers included: Deborah Estrin, Professor of Computer Science at Cornell Tech and co-founder of OpenMHealth, Kyle Armbrester, Business development athenahealth , Anuj Desai, VP of Market Development at NYEC, Kabir Kasargod, Director of Business development at Qualcomm Life, Patrick Roohan Deputy Commissioner of Office of Quality and Patient Safety, NYS Dept. of Health, and Karan Singh, Co-founder of Ginger.io
This panel focused on the value that can be obtained from data. The panel spoke about Big Data as well as individual data and how we can provide useful information at the clinical, individual and systems level. The importance of interoperability was stressed and the idea of “freeing the data” is about not being held hostage by legacy systems that tether providers and patients to any one system.
Ms. Singh spoke about how data can be an important component in behavior modification. Indeed, access to our own personal data can give us insights into the things we do that can promote or prevent health. At a population level, trends that can be garnered from the data could be used to analyze whether measures we have initiated are leading to set outcomes and help guide future initiatives.
Mobile will play a very big role in data. Wearables can collect data off of mobile and more people have mobile phones now more than ever. OpenMhealth, is an initiative to unlock silos of mobile health data (more info here: http://openmhealth.org/) and build an open architecture. I think that this is great because it’s almost like increasing the n value, so that trends can surface and the power of studies increase. Unlocking data is not only about being able to access it, it’s also about being able to share it and derive valid and actionable endpoints from it.
1. What is Kiiln? Why did you start it?
KiiLN stands for Keystone for Incubating Innovation in Life Sciences – NYC. The acronym plays on the idea of a kiln firing up creative ideas and is a reflection of what we are developing: a wetlab incubator space for biotech startups growing out of the New York area academic institutions.
We at KiiLN identified a need for a space in the city where biotechs spinning out of academia can grow and succeed. While NY is a thriving hub of life science research, there is a dearth of biotech incubators in the city where startups can develop their projects in a wet-lab facility and interact with the experts who can help them grow from an idea and succeed on the market.
2. Tell me about your team. How did you meet?
The idea for KiiLN was crystallized when the founders came together in the inaugural QED class offered by the Center for Technology, Innovation and Entrepreneurship at Mount Sinai. At the time, we were five postdoctoral researchers working in areas ranging from diabetic and non diabetic kidney disease (Gabriella Casalena and Ilse Daehn), systems biology in neuroscience (Yana Zorina) and neurodegenerative diseases (Nicole McKnight and Merina Varghese). Our shared interest in converting discoveries from the lab to drugs available to patients drew us together to work on KiiLN. Ilse has since been promoted to Assistant Professor and Yana has moved on to Acorda Therapeutics as Scientist, but both are still actively involved in KiiLN.
We are also good friends and have enjoyed spending time together working on KiiLN.
3. What is it about life sciences that inspires you?
MV: I have always been fascinated by what drives life and how the microscopic components of cells make us what we are. My research interest lies in learning how brain cells use energy and process proteins. By understanding these processes, I hope to uncover how brain cells die in diseases like Alzheimer’s and Parkinson’s.
ID: My main research interest lies in understanding cellular and molecular mechanisms of diseases. How does certain (oxidative) stress influences can alters the cellular environment driving chronic diseases and cancers? Understanding these mechanisms will help uncover key therapeutic targets for treating human diseases. I am also interested in identifying what early markers in the blood or urine can help us predict early stages or progression of chronic diseases.
NM: I am originally a molecular and cell biologist but am now working in the field of neuroscience. I am very fortunate to be translating my PhD studies of the cellular membrane trafficking pathway of autophagy into studies that may identify a target for a drug to treat neurodegeneration by using mouse models. I worked in a startup in Cambridge Massachusetts before I began my PhD and loved it. I was employee number seven and we grew to over 30 people in the two years I was there. Everyone pitched in a worked together as a team, doing all sorts of different jobs from DNA cloning and protein expression to building out lab space for various uses. I cannot wait to get back in the start-up environment.
4. What do you want to do with Kiiln?
MV: We envision KiiLN being the keystone of the growing biotech hub in NYC. More than ever, team science is needed for innovation and KiiLN seeks to promote collaborative efforts among the NYC area research centers by bringing together talent and expertise from all these centers.
GC: As scientists, we share the common ambition of changing the life of patients by finding medicines to cure or prevent diseases. We all put our hearts and minds in achieving valuable new results in our labs but we are well aware that the only way to really move medicine forward is allowing the brilliant ideas born in academia to further develop and find a way toward commercialization. KiiLN will likely catalyze this process.
NM: I know you hear it all the time, but New York City has everything it needs to be a huge biotech hub including more than ten world-class research institutions (we receive the second most amount of money from the NIH annually!), an energetic and highly-educated workforce, money, and successful industries like tech and media, from whom we can learn valuable lessons. KiiLN wants to contribute the missing factor (affordable incubation space for start-ups) that will help NYC be what it can be in the biotech world.
5. What does it mean to be a woman in science?
MV: With increasing awareness about the paucity of women leaders in science and recent findings about an inherent bias in the perception of women scientists, I find it important to mentor young people, both men and women, who are interested in science and to speak up about issues that may drive talented people away from careers in science. By actively participating as a mentor in the summer research program at Sinai and serving as a member of the Postdoc Executive Committee, I am working to make a difference in the lives of young researchers in the Sinai community.
NM: Throughout my education, from elementary school through my PhD training and my postdoctoral fellowship, I have experienced nothing but equality between the boys and girls and men and women in science education, which is something that should be celebrated and commended. In fact, 55% of Mount Sinai postdocs are women. But we are reaching a critical point in our careers when woman start to drop out and we see in the academic world that men greatly outnumber women when it come to positions of lab heads and especially beyond that, department chairs. Perhaps this is left-over from our previous generation but it is certainly something that we need to work on. I have a signature in my personal email account that states: ‘Nearly 40 percent of women in New York with a bachelor’s degree hold them in science, engineering, and related fields, yet women hold only about 8 percent of the tech and scientific jobs in the city. About 18 percent of startups in New York have women founders (data from the New York City Economic Development Corp). But we can do it and I think over time this will improve.
6. What do u think is the best part of entrepreneurship? The hardest part?
MV: As entrepreneurs, the excitement of having a good idea recognized for what it is and encouraged by the community is a great motivator. Perhaps the toughest part is facing entrenched attitudes about how research should be done.
ID: Much like being a scientist, being an entrepreneur means you need to be a forward-thinker and it also requires talent, creativity and patience. However, what differentiates an entrepreneur is outside-of-the-box thinking and the hardest part – willingness to take action.
NM: The best part of entrepreneurship comes when you actually make something happen. When we are finished building KiiLN and we are with the mayor and all the people who have helped us along the way at the ribbon cutting ceremony, that will be a pretty amazing day and well worth all the efforts. The hardest part is the energy that is needed to succeed. There is always one more email to write, and then a response to that email! But persistence, consistency and enthusiasm seem to be rewarded in the field of entrepreneurship.
For more information about Kiiln, visit their web site at: http://kiiln.org/
Follow them on Twitter @KiilNYC.
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