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13 Interviews for Doctors 2.0 & You 2016 by Denise Silber

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Meet 13 of the great speakers and participants at Doctors 2.0 & You 2016, May 26-27 Paris.

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13 Interviews for Doctors 2.0 & You 2016 by Denise Silber

  1. 1. Meet 13 of the Speakers and Participants at Doctors 2.0 & You, Paris - May 26-27, 2016. Doctors 2.0 & YOU – 6th edition  Emily Kramer-Golinkoff  Dr Gia Sison  Pat Rich  Fabrice Angelini  Dr Tunde Salako  Dr Anabel Salazar  Lorena Macnaughtan  Djamila Olivier  Kaat Swartebroecx  Andrea Borondy Kitts  Juliette Renouard  Geraldine Gueron, PhD  Nathalie Jullian, PhD
  2. 2. You didn’t meet Emily Kramer-Golinkoff in Paris patient advocate at the White House ? See her at Doctors 2.0 & You Paris May 26-27 #doctors20 Interview by Denise Silber – February 9, 2016 The Doctors 2.0 & You patients-included community is beyond thrilled that we will be receiving Emily Kramer-Golinkoff in Paris as a guest speaker at the 6th Edition at the Cité Universitaire, pictured on the right. Says Doctors 2.0 & You founder, Denise Silber, “Emily is the empowered patient’s ‘empowerer’ and we met at one of my favorite places, Palo Alto, at Stanford Medicine X, sister conference to Doctors 2.0 & You”.In addition, and she did not mention it during this interview, Emily was invited to the White House in 2015 for President Obama’s Precision Medicine Initiative. She was also “hero of the week” in People Magazine and presented by Time Magazine. Q1. Please tell us a bit about yourself, your work, anything personal you’d like us to know, and do include a fun fact. My name is Emily. I’m 31 years old with Cystic Fibrosis and Cystic Fibrosis related Diabetes. I’m from Philadelphia, Pennsylvania, where I run a foundation that I started with friends and family in 2011 called Emily’s Entourage, which aims to fast track research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis. Fun fact — I wear size 4.5 shoes (which in Europe is just under size 35). Q2. How about a quick word on « time management » ? What is your daily life like, balancing your work, your foundation, your life as a patient ? Time management is a constant struggle for me ! My days are filled with medical treatments, meetings, phone calls, email correspondence and most of it usually happens over coffee. We joke that we run our foundation from local coffee shops. Between running a foundation, traveling around the country for patient speaking and advocacy opportunities and doing 3-4 hours of daily medical treatments (when I’m healthiest), I’ve become quite well versed at multi tasking. I have intricate systems for managing my inbox and I use my treatment times to respond to emails and also connect with the online CF community.
  3. 3. Q3. Do you recommend any special « good health habits » whether about diet, exercise, meditation… that have made a difference for you ? I spend many hours on medical treatments each day and it’s been well over a decade since I’ve missed one. They’re the first thing I do when I wake up in the morning, the last thing I do before bed, and by midday, I’m craving another treatment session. Those treatments let me breathe, they keep me alive, and they allow me to spend the rest of my time pursuing all the things I want to do in the world. That’s the most motivating force possible — looking around at the world and my bucket list and seeing all the things I still am dying to do. I’m also a big believer in eating healthy, staying hydrated and being active. I wear my Fitbit religiously and I strive for 10K steps per day despite advanced lung disease, which certainly makes that goal harder. Q4. Can you tell us of any apps you use whether for health or other, that you really love? Fitbit, Apple Watch, and Google forms that I’ve created myself to track various health metrics like blood sugar and insulin usage. Q5. You’ve never been to Doctors 2.0 & You. But you have gotten a lot of exposure to it virtually and in seeing me at Stanford Medicine X ? So, what do you value about this event ? What made you want to participate ? I’m so looking forward to connecting to the international digital health community. I’ve been fortunate enough to be part of Stanford Medicine X since 2013 as well as many other exciting conferences and initiatives within the United States. These experiences have been totally transformative for me and I can’t wait for my advocacy to take on a new global dimension and to have the opportunity to learn from peers and fellow health care change-makers from all around the world. I have so much to learn and I’m so excited to get started ! Q6. And finally, please give us a teaser about what you might discuss in Paris, during your talk. I’ll talk about the importance of shattering the ivory tower of biomedical research and clinical care by meaningfully incorporating patients in every part of the process — to expedite progress and deliver life- saving breakthroughs in time. The power of infusing biomedicine with stories for humanity and urgency — to harness the power of communities to spur progress and promote idea sharing and collaboration. How in the era of precision medicine, where therapies are becoming increasingly personalized, each person has to be his or her own advocate and mobilize a network for maximum impact. Social media is an invaluable tool for building community, telling stories, and rallying support for rare mutations of rare diseases.
  4. 4. Emily's biography Emily Kramer-Golinkoff, a 31 year old with advanced stage Cystic Fibrosis and Cystic Fibrosis- Related Diabetes, is Co-Founder of Emily's Entourage, a 501(c)3 that raises funds and awareness to accelerate new treatments and a cure for rare (nonsense) mutations of Cystic Fibrosis. She is also a nationally recognized patient advocate and speaker and serves as a strategic advisor to the Penn Social Media and Health Innovation Lab. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised nearly $2 million since 2011 and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists, biotechnology and pharmaceutical companies in this area. With only 35% lung function, Emily spends over 3-4 hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease. Named a White House Precision Medicine “Champion of Change,” Emily has given talks at The White House, TEDx, ONC Consumer Health IT Summit, University of Pennsylvania’s Annenberg School for Communication graduation, and Stanford University’s School of Medicine and Medicine X Conference, where she is an ePatient Advisor and member of the Precision Medicine Advisory Panel. Her story has been featured on People.com, Time.com, Yahoo Health and other media outlets. Emily has a master’s degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. You can follow Emily at @EmilyKG1 and Emily's Entourage at @EmsEntourage4CF.
  5. 5. Meet Dr Gia Sison, Clinician and CMO of a non-stop telehealth facility in the Philippines #doctors20 Interview by Denise Silber – February 19, 2016 How fortunate I am to meet such extraordinary people, thanks to the intersection of the worlds of digital health and social media ; digital health innovators tend to have an active social media life which makes it easier to reach out. And now, you too can meet the amazing Gia Sison, MD. Gia Sison will join us in Paris, May 26- 27 at Doctors 2.0 & You, where she will speak about her very active experience in a busy telehealth center, in a country sorely lacking in access to care. Q1. Tell us a bit about yourself. What is your daily life as a clinician and a digital specialist in the Philippines like ? I'm your ordinary doctor with an extraordinary mission as a patient too. I'm a certified workaholic and a passionate advocate of health and social media. My daily life moves around digital health, I head a group of doctors as their Chief Medical Officer running a 24/7 facility for Telehealth services in the Philippines. I see patients during weekends usually Saturdays and I find time to be a brand ambassador of a fitness facility who believes that Exercise is Medicine, so I walk the talk with a simple wearable my Fit Bit and my iWatch as a firm believer of digital health. Q2. You have a second specificity, as a former cancer patient. Can you tell us how that impacted your professional life after that episode ? Here's my sentimental take on my whole experience-- As a physician I can only hope and pray for the best being aware of the statistics in medicine. As a warrior my faith does not allow any room for doubt, just complete belief that a Higher Power will complete my belief for complete healing and a miracle. As a patient I cannot help but empathize more than others.
  6. 6. Q3. I know as well that you practice « good health habits » …How is that working out ? So far I am putting the health is wealth up into practice walking the talk, literally making time for physical activity doing circuit training after work. Really dead serious about it. I eat moderately though and I am more conscious with what I buy too, no parabens for me. Q4. We know that bandwidth is an issue in the Philippines, but, besides Facebook, can you tell us which apps you use personally and professionally ? I am a strong Twitter user and my cloud space is probably more than what it can contain. I rely heavily on One Note, my iWatch is overused. I believe Instagram should be used also to promote health but at the same time also contain happy candid moments. I like Figure 1, Doodle, Netflix, Periscope. Q5. Finally, you’ve never been to Doctors 2.0 & You. But you have gotten a lot of exposure to it online. So, what do you value about this event ? What made you want to participate ? The honor of being able to share my own experience in digital health from a Philippine perspective. I value the collaboration in Doctors 2.0 & You and the strong friendships developed just like you and me and the chance to also share a part of me with all of you. Q6. And please give us a teaser about what you might discuss in Paris, during your talk ? It's about telehealth in the Philippines being a shy typed culture in innovation, building on empathy- driven questions during phone consults and how we have overcome the hurdles when we first launched it. You can meet Dr Gia Sison on May 26-27 in Paris at beautiful Cité Universitaire. Doctors 2.0 & YOU, Together for Digital Health
  7. 7. A quick look at Canadian healthcare social media then and now, with Pat Rich #doctors20 #hcsmca Interview by Denise Silber – March 4, 2016 Pat Rich has a truly longitudinal view of Canadian physician behavior on the web and he's passionate about the potential for healthcare social media. In fact, Pat was brave enough to propose and present at one of the first Doctors 2.0 & You in Paris, the lessons learned from the failure of the first Canadian physician portal in the hopes that others could get it right. He'll be back soon with an exciting study contrasting Canadian and American physicians online. Q1. Thank you Pat for accepting this interview. Tell us a bit about yourself. How did you wind up working with the Canadian Medical Association, what was your mission there, and what are you doing now ? I am a medical and healthcare writer and a commentator on the use of social media in health. After 20 years working with major medical publications in Canada I joined the Canadian Medical Association in 2001. I filled several senior communications roles at the CMA including helping coordinate their website and developing their social media strategy. I was also editor of a magazine on health IT to help educate doctors on the issues. At the end of last year I parted ways with the CMA and am now establishing myself as an independent writer, editor and social media consultant. Q2. Would you consider yourself a geek ? I definitely don’t consider myself a geek, but I do see social media tools and platforms as new ways to enhance how people communicate. My interest in social media evolved organically from my work online with WebMD and the CMA. I do believe the use of social media in health care does have the capacity to fundamentally enhance how people can maintain their own health and how health care systems can improve outcomes. Q3. Which social media channels do you find the most exciting in healthcare and why? Twitter is currently the most dynamic social media platform for use in health care. It allows individual providers to source the information they need more efficiently while also allowing them to build strong professional networks that can encompass individuals worldwide in their own profession as well as individuals in other healthcare sectors, as well as patients. Twitter has also shown its value in increasing the reporting out from all leading medical and healthcare conferences through live tweets. Twitter is showing its value too in medical education, research and health advocacy. Online social networks - either closed private networks for specific professions or online patient communities - are changing how knowledge is gathered and shared in health care. Such networks, such as Sermo for physicians, are helping individuals crowdsource solutions to individual care issues they face. The same is true for patients using sites like Patientslikeme.com.
  8. 8. New and exciting social network tools such as Periscope and Blab are bringing a much more visual lens to these health care networking opportunities. Q4. How would you describe the use of digital tools in the Canadian health system ? What stands out about Canadian doctors and their relation to technology ? I presented a paper on the social media aspects at this at the recent #hcsmca symposium in Canada. (http://www.slideshare.net/PatRich2/everywhere-and-nowhere) Canadian doctors are definitely on the digital health bandwagon right now with the vast majority using electronic medical records. However, it is still early days when it comes to Canadian physicians making use of social media professionally or in expanding their use of digital tools such as mobile apps to increase patient engagement. There are some early adopters but the vast majority of physicians in Canada still have no incentive or interest in expanding their use of digital tools to deliver patient care. Q5. You’ve spoken once at Doctors 2.0 & You. What made you want to participate the first time and now to return ? There are very few conferences or meetings that bring together physicians, patients and others interested in the use of social media in medicine and health. Having met you (Denise) at one such conference in Stanford I was eager to attend and speak at Doctors 2.0 & You. I am also a big supporter of bringing a real life element to virtual networks and attendance at Doctors 2.0 and You gave me an opportunity to meet many European contacts and leaders in this area. I feel this year – with my new evolving role – was a good time to revisit the conference. And besides, who can resist Paris in the spring. Q6. And please give us a teaser about what you might discuss in Paris, during your talk I have been struck by the huge difference in reported rates of professional social media use by physicians in various countries. I want to report out on why there seems to be such a gap between professional social media use by doctors in the two countries I know best – Canada and the use. Information coming out from the huge health IT conference (HIMSS) I am currently attending in Las Vegas gives me more fodder for my talk. Join Pat Rich and myself at Doctors 2.0 & You May 26-27, 2016 in Paris, at this lovely venue called Cité Universitaire Internationale de Paris.
  9. 9. Digital Health passion and Attending Doctors 2.0 & You with Fabrice Angelini #doctors20 Interview by Denise Silber – March 10, 2016 Thank you Fabrice Angelini first of all for being such a great supporter of Doctors 2.0 & You and for taking the time to answer these questions in detail. Q1. How did you choose to work at Thermofisher and what is your daily life like working there? I’m a self proclaimed “digital healthcarist”, living in Saint-Emilion, France, probably not the best choice for digital, but quite a fantastic place to live. I have a PhD in molecular genetics from the University of Bordeaux and I started in sales with a company that got purchased by ThermoFisher Scientific. Now I work in "products" on new and creative areas, thanks to the very open environment. I travel all around France. My time is spent curating clinical information, coaching sales reps, on testing apps, and I have a project with a French teaching hospital, regarding a compliance app that we developed. Q2. I know you would describe yourself as a « geek ». So, tell us more. I don’t really like the word, but it’s the simplest way to describe my technology focus! I have a passion for computers and software and the way they help us shape our lives. I can remember the beginnings of the commercial internet, when I was a student. I immediately saw the benefits of the web for me, compared to spending endless hours looking for published papers, and so I got tagged as a geek by my colleagues. But I’m neither a Hikikomori nor a computer scientist. I am a totally average citizen with a positive perspective on information technologies!
  10. 10. Q3. Which apps do you use most personally and professionally? Personally, besides the usual apps (social media, Dropbox, …), I’m using TheGrid, to create my own website about the evolution towards technological singularity. For work, I use Slideshark, MyAnalytics, Ubleam, and some medical apps like Biomarker and iPCT. Q4. How did you become interested in digital health? 6 years ago I started paying attention to digital health news and projects, but it was pharma-focussed and limited. Then I got interested in our customers as the starting point for data. I identified clinical key opinion leaders such as Dr Bertalan Mesko and watched his video, “What if Dr House had used Twitter ?”. I found his passion, dedication and clarity absolutely aw- inspiring ! I read his books and others he recommended. I could imagine a future when the disruption of information technologies and medicine would lead to a totally different healthcare system, with much better performance. I discovered Ray Kurzweil, singularity theories, digital/software driven medicine, the involvement of companies like Alphabet/Google, the rise of precision medicine… And in the process, I discovered Doctors 2.0 & You! Q5. How did you find out about Doctors 2.0 & You? What made you decide to attend the first time ? When I identified the persons that were inspiring digital health trends and the evolution of relations between clinicians and patients, the only interaction I could have with them was on the Net. How could I have a discussion with someone that’s considered an inspiration by so many, when I was just a random twitter handle among thousands ? One of those really high rated key opinion leaders was you, Denise Silber, and following you, I heard about Doctors 2.0 & You. I found out it was a fantastic opportunity to meet those people, listen to them live, and to interact directly with them, with no digital filter. My decision was made, if I really wanted to understand the nature of the digital healthcare community, I had to attend to the congress and see if I could fit in. Probably one of the best decisions I made at the time!
  11. 11. Q6. And once you were there, what made you want to return ? 1) I remember the @berci keynote from that year and 2) the ease with which I could discuss with people I had only read about on the net, but never felt like engaging. How wrong I was! I met with others I didn’t know, found out that live tweeting is much more fun than expected, and heard of projects/products I wouldn’t have been interested in, and finally found amazing. It was a great mix of both open-minded skilled and experienced speakers and people like me; and everyone could speak up and interact in a very positive way. I felt welcome. Broadening the audience is the best way to optimize our capacity to innovate and create and to make the community move forward! Q7. And what are you hoping to do at the 6th Edition?Honestly, if this edition is as good as the previous one, I’d be delighted! I will be really glad to meet up again with all the persons I can only see at this event, and of course am expecting to meet new ones ! Expanding the scope of the community is important ! I also expect to learn about more projects and get different perspectives on some technical, cultural or conceptual hurdles. I’m expecting a bright future, as soon as we complete a digital transformation of our Society, and everyone gets access to innovation. To sum it up, what I’m really looking forward to do in Doctors 2.0 & You this year is meeting up with everyone and getting to know more fantastic people ! Join Fabrice, Denise, Berci, and many more at Doctors 2.0 & You May 26-27, 2016 - Paris
  12. 12. Nigeria and mHealth: HMO's are positioning themselves. My interview of Dr Salako. #doctors20 Interview by Denise Silber – March 20, 2016 Dr Tunde Salako is the managing director of a leading HMO in Nigeria. MHealth and digital services are part of the strategy. Tunde kindly answered my questions, in preparation for his participation as a speaker at Doctors 2.0 & You, 6th edition. Q1. Please tell us about your professional background and current activity as a physician and manager in Nigeria. I am a physician in management with both local and international experience in healthcare management, marketing and insurance. I am an alumnus of the College of Medicine University of Lagos, Nigeria and Imperial College London. The role of the physician is rapidly evolving, as healthcare organizations globally require trained physicians to be positioned at the helm for strategic advantages and value driven outcomes. I shifted toward business, when the Nigerian National Health Insurance Scheme was enacted in 2005. But even prior to that, it had been evident that as a healthcare professional there was a gap for healthcare professionals to plug, having the skill-set. It’s amazing the day-to-day activities that ensue. I am in a world where I get to understudy consumer behavior, to design and re-design products, and also to decipher value-added solutions for the 21st century consumer’s appetite. Simply put, I enjoy every bit of it. Q2. We hear that there are few physicians in Africa. What is it like to access care in Nigeria ? We have trained many physicians all over Africa in the past decade. In Nigeria alone, thousands of physicians are inducted yearly. The paucity of physicians results from where each professional decides to be geographically located. A KPMG study revealed last year we had over 3500 doctors in the Americas and Europe. As a result, healthcare consumers are embracing unconventional methods. We
  13. 13. have mixed models of accessing care: private health insurance, government health schemes, health retainers, community health schemes and so on given our country’s large population. Q3. Tell us about mobile phone use in Nigeria and what use is still being made of « landlines ». There has been a boom in the Nigerian consumer telecom sector in the past 20 years, with over 126 million “active” mobile lines as of March 2014. 61% of Nigerian internet users are mobile internet users as of 2014. So to engage a potential client on whatever service or product you are offering, the mobile phone is the best approach. As an HMO, we at Redcare are very passionate about creating value for our customers. We digitized our processes to spin off a mobile app for easier engagement and accessibility. However, landlines are still being used in the corporate world and formal sector for various business functions such as conference calls and one to one conversation. But you would not find landlines in homes and communities. It is just so much easier to rely on mobiles and rates are very competitive. Q4. Which apps you use most personally and professionally ? Definitely for starters my mobile banking apps, Whatsapp, iBooks, Apple radio and personal meditation and organizer apps. Professionally, I would say LinkedIn, Salesmesh, Dropbox and Skype. Q5. What about social media? How would you describe its use in Nigeria? “Social media is the new SEO” as these two have been juxtaposed globally. This resonates here, as with our astronomical population size, social media impacts consumer behavior, social habits, communication. With 78% of the total internet population being between the ages of 19-35, and students representing 41% of this population, 83% of Nigerian active internet users are active on social media. Q6. You've never been to Doctors 2.0 & You. But you have gotten a lot of exposure to it online. What do you value about this event? What made you want to participate? Wearable tech and health apps are on a rampage globally and being more readily accepted. The future of healthcare passes through the intersection of digitization and mobile technology. I see your summit, Doctors 2.0 & You as a hub of ideas, innovation and tech that will revolutionize the concept of healthcare access, delivery and intervention. In addition, we will also bridge the gap between healthcare innovation in the mature systems and emerging economies. Q7. And please give us a teaser about what you might discuss in Paris, during your talk? I will be talking about digitizing health insurance services and the evolving space within Africa. Also with an overview on the different models to reduce turnaround time, foster real time communication and mobile identification of insurees. Join Tunde Salako and a global community from all of healthcare (pharma and insurers, government, professionals and patients...) for a spring summit, on May 26-27 at Cité universitaire. The "Cité" is the only campus within Paris city limits...and beautiful it is. Follow hashtag #doctors20 Check out Doctors 2.0 & You.
  14. 14. Spain : Dr Anabel Salazar, fertility expert, transitioned from no smartphone to near "geekdom" in the interest of her patients. Read how. Interview by Denise Silber – March 23, 2016 In her own words, Dr Anabel Salazar, fertility expert in Spain, "didn't know who Steve Jobs was until he died." But her participation less than a year later at Doctors 2.0 & You in Paris, inspired her to initiate the development of her clinic's own fertility app. Anabel will be presenting the app's first results in May 2016, at the 6th edition of Doctors 2.0 & You. She kindly answered my questions. Q1. Tell us about yourself. How did you choose to become a fertility specialist, and what is your daily life like working in a clinic in Spain ? I have the best job in the world, helping couples that struggle with infertility to fulfill their dream of parenthood. During the last year of my training as a specialist in gynecology and obstetrics I had the opportunity to visit one of the IVI clinics in Spain. That day I decided that I would work with this group and become a specialist in reproductive medicine. I started here in 2007 and I have worked in different clinics in Alicante, Seville, and Madrid. Since 2013, I have also been part of the new clinic in Málaga as both a gynaecologist and medical director. Currently I combine my work in the office and surgical procedures with patients, with management tasks such as team organization, scientific projects and training courses for doctors, nurses and patients in reproductive medicine. Q2. How computerized and digitally oriented is the clinic in which you work ? Can the patient’s file be shared electronically outside the clinic with the patient, with other professionals ? One of the things I liked the most when I first met this organization was the electronic medical records system, which is the same for the whole group, and the clinics are all connected. There is constant collaboration between the systems team, physician management, and the quality department. We are always developing new tools and applications that we try to make as useful as possible for all the staff. The program we have today is not the same one we had a year ago. And the whole team is changing it together, inputting the opinions and experience from the biologists, doctors, nurses, receptionists, and of course, the patients.
  15. 15. In January 2016, we launched our patient portal and its app. Some parts of the medical records can be seen by patients on their devices. This is going to be changing based on the feedback we’ll be getting from patients and staff. We have also launched another app for external physicians sending patients to the clinic, so that they can follow up on the procedure and have updated information about their patients’ pathway at all times. Last but not least, we have our medical team app, Conecto, where we share protocols, scientific papers; it is like a Facebook for the specialist to share knowledge. Q3. You are not a geek ;-), but can you tell us which apps you use most personally and professionally ? For work, I use our medical knowledge platform (Conecto) and the apps from the top scientific journals in fertility. Personally, my favorites apps are the social media ones (Instagram, Twitter, Facebook, Linkedin, Pinterest, Spotify) and I use them on my iPhone. Q4. Do you use social media professionally ? Do some of your patients find you thanks to social media ? It’s 50-50, professional and personal. On Twitter, I share info about fertility issues, but also about running or swimming. On Facebook, I am more private, only for family and friends. Some patients find me on Twitter and ask me questions. When this happens, I try to help them, but it is not my main goal for being on social media. I think doctors should be out on social media to give trustworthy information about medical conditions. It is an educational responsibility. Without us, the information won't be validated or as relevant. Anyone can Google to learn about a medical problem, a chronic disease or an infertility treatment, but patients appreciate it when we doctors take the time to send correct messages to the general population, and social media gives us the easiest and cheapest way of working on this. Q5. You came to Doctors 2.0 & You a few years ago. What made you want to attend the first time ? When Steve Jobs died on 2011, I even didn’t know exactly who he was. Can you believe it? My cell phone at that time had no internet connection. I only used it for messages, talking and taking photos. Then my husband thought it was time for me to have an iPhone, and my life changed. I started to learn about social media, and I discovered Twitter. At first I only read tweets and followed some profiles. Then I thought that maybe doctors were also on twitter and I found some who were very active. So I started to follow them, and I learned about this congress and I experienced for the first time in 2012 at Doctors 2.0 & You how great it is to meet someone in person that you have met before on Twitter. It was amazing. Q6. And at Doctors 2.0 & You, you got the idea of doing an app for your fertility patients, correct ? Why/how did this idea come to you ? When I attended Doctors 2.0 in 2012, I learnt a lot of experience from colleagues and patients working together on diabetes, chronic diseases, pediatric conditions. I started to think that developing an app to share medical instructions, information, records with the patients during their fertility treatment would help us in our daily work. We would be able to engage with the patient’s personal situation.
  16. 16. Our organization had been thinking about this for some time. Our core mission is to lead reproductive medicine, and innovation through digital health is part of leading medicine nowadays. We want to be part of this history and lead reproductive medicine 2.0. Q7. You are looking forward to returning to the 6th edition in May, 2016. Please give us a teaser about what you might discuss in Paris, during your talk. We will discuss about how the new patient-doctor relationship should be managed. New platforms are coming, but doctors do not have enough training yet for this kind of new relation. **** Meet Dr Anabel Salazar at the 6th Edition of Doctors 2.0 & You, May 26-27, 2016 in Paris, France, at the lovely Cité Universitaire, the only university campus in Paris proper. Register on Doctors 2.0 & You.
  17. 17. "Multi-disciplinarity is fundamental to digital health" Meet Lorena MacNaughtan (UK) at Doctors 2.0 & You. #doctors20 Interview by Denise Silber – March 31, 2016 Pursuing my series of interviews of Doctors 2.0 & You participants, next stop is with Lorena MacNaughtan at the University of Nottingham. How would I describe her : a digital economist ? A digital health speaker and supporter at Doctors 2.0 & You ? A connector who thrives on multi-disciplinarity ? An expert on Romania and the UK working on the Interactive Central and Eastern European Festival where I'll also be speaking? All of the above. Q1. Lorena, how did you decide to study for a PhD in eHealth, and what is your focus there ? The word that best describes my interest is "multi-disciplinary." I was always interested in healthcare, but Horizon Digital Economy Institute at the University of Nottingham, where I'm doing my degree, got me hooked because of its combined interest in society, business, economy and digital. When I started, we were in 2010, and I was actually their first PhD candidate to focus on health, which took some convincing. My area of research is how Digital Health has developed since the introduction of smartphones and how tech start-ups experience and engage in this field. I hope you will be curious to learn about Digital Economy, thanks to the linked video. Q2. You keep in touch with Romania, your country of origin, while you are living in the UK. Are there more similarities or differences in how the Romanians and British accept use digital tools? Let's start with two points for Romania. ;-) In Romania, most private healthcare providers have apps via which patients can access their records, appointments, manage treatments...This is less true in the UK. Also, Romanians are really impacting civic matters via social media, particularly Facebook. A large-scale example is the fall of “Ponta’s government”, in November 2015, thanks to the use of social media. On the other hand, the UK is leveraging public administration and developing online shopping much more than Romania. But Romania may be lagging behind due to its poor physical infrastructure, which makes logistics difficult.
  18. 18. Q3. Would you describe yourself as a « geek » ? If by geek, we mean a digital aficionado for the sake of technology, no I'm not. But if geek means "very curious and passionate", then yes I am. I am passionate about the use of technology for healthcare, society, and business. There’s a video I love which talks about "The Adaptable Mind" and how creativity will help us adapt to the 21st century. Have a look here. Q4. Which apps do you use most personally and professionally? My top apps are for social media, travel, cloud storage and collaboration. But I also have Minecraft, Angry Birds, Talking Tom and so many others my kids have installed. As for health apps, I am installing and uninstalling on a regular basis. Some apps I genuinely want to explore, others I look at, because it is important to experiment with what’s being developed. Q5. You found out about Doctors 2.0 & You from meeting Michael Seres and myself, I believe ? What made you decide to attend the first time ? Yes, that was May 2015. I was following you and Michael online. You said the conference would really match my interests, and I was so appreciative that you'd take the time to analyze that, that I wanted to come… I remember Michael Seres saying “Lorena, trust me, you have to go ! It is so different !”. He did not elaborate, just insisted I see for myself. And so I did... Parallel sessions and break time - Doctors 2.0 & You 2015 Q6. And once you were there in Paris at Doctors 2.0 & You, what made you want to return ? Doctors 2.0 & You has a great ethos. It inspire loyalty, engagement, and you, Denise, are great in giving the feeling that everyone really matters and making introductions. And so, I believe this ethos is really you, enhanced by everyone there. It is one of the few events where you meet people who feel and know that there is a better way in healthcare for all, and technology may actually make it possible. Also, I like the format, I believe it works really well : smaller sessions first day offer people a chance to interact more. The venue is exceptional, and so all that comes with the organizational side. The crowd is open, dynamic, and engaged. Topics are great, well-presented, inspiring, and thought
  19. 19. provoking. Sessions are well moderated, the plenary session is upbeat, interesting. Lots of food for thought, great memories, old friend, new friends ! And then... it’s Paris ! Q7. And what are you hoping to do at the 6th Edition (besides being a speaker) ? First, I am excited and humbled to have the opportunity to present during the 2016 edition ! In 2015, I met so many extraordinary people from all over the world, with fantastic stories and achievements in this area. I want to take everything in, because it is different and meaningful, intense and transformational. Q8. Any hints about your topic at Doctors 2.0 & You 2016 ? You can bet I'll be presenting some of my work about the complexity of digital health. Check out my blogpost, In Digital Health, Who Comes First? The Technology, the Regulator, the Patient or the Doctor? You can find out more about my work on http://lorenamacnaughtan.com/publications/ and by following me on Twitter @L_Macnaughtan or LinkedIn. And to conclude, I hope you don't mind if I post here some more cool pictures of the stage! Plenary session - Doctors 2.0 & You 2015 Join Lorena Macnaughtan in Paris at the 6th edition of Doctors 2.0 & You on May 26-27, 2016. The lovely green venue is situated on the only university campus in the city, Cité Internationale Universitaire.
  20. 20. How Mature is 3D Printing in Biomedicine ? Ask Djamila Olivier G. at Doctors 2.0 & You Paris #doctors20 Interview by Denise Silber – April 4, 2016 Have you been following my series* (see bottom of page) of interviews in view of Doctors 2.0 & You 2016 ? On to #8 with Djamila Olivier Gonzalez, Materials Engineer. Djamila who runs her own consulting business in Barcelona, in this highly specialized field, will be providing her incredible insights into 3D Printing at Doctors 2.0 & You on May 26-27, 2016. Q1. Djamila, you’ve been interested in both health and materials engineering over the years. How are you involved in them today ? What excites you about 3D printing in healthcare? Materials engineering is a very interesting discipline. I became interested in it after studying organic chemistry at high school. As a materials engineer, you have to study, correlate and leverage the internal shape, behavior and morphology of materials with the potential applications. Applying this analysis to the materials that Mother Nature has created is fascinating because Nature is the highest intelligence, and it is hard to figure out how to mimic it. My interest in 3D Printing came together with healthcare applications, because the manufacturing technology is making it easier to mimic natural material structures. This in turn is taking science to the place of creating improved and more efficient solutions for medical problems that involve tissue and cell destruction. When I was a young student, I would have never imagined being involved with such amazing ideas. Today in my work I merge my knowledge about computer graphics, additive manufacturing methods, materials/biomaterials properties, robust project management and 3D printing market trends to help my customers create real life solutions for specific healthcare problems. Q2 Would you describe yourself as a geek ? I must confess I had to look this word up in the slang dictionary. And yes, I am one. :-D Q3 And which are your favorite apps ? I use my PC more than mobile to do things. I use everything that Google offers (for Windows or Android for mobile). I use wisemapping for mind mapping projects, PTC creo, 123DCatch, Blender, Inkscape, Meshlab, Cura and Invesalius for 3D printing projects :-DDD
  21. 21. Q4. You found out about Doctors 2.0 & You recently from meeting people who know of it in Spain and in talking with me. What makes you excited to attend and speak ? I became an expert in this field by accident…in the sense that I would not have thought it was going to became so popular, I just liked it and went for it... Now I see that one of the greatest limitations of the progress of the 3D printing field is basic knowledge for those who are new to the field. So that is why I decided to create a consulting business with a strong training and academic approach. Based in a cosmopolitan city like Barcelona, I have developed a lot of opportunities here, but I find very interesting to learn from professionals from other countries also. This is my first time visiting Paris and I am very excited about it also !!! Thank you very much for this opportunity. Q5 Any hints about your topic at Doctors 2.0 & You without giving away the learnings ? Yes, there is so much excitement and competition about 3D Printing in the scientific and technical community that sometimes the achievements are a little bit inflated...this is commonly called hype. I will talk about the maturity of the applications of biomedical 3D printing, and I will highlight the most promising ones. I hope this will make you curious to attend my talk. Join Djamila in Paris on May 26-27 at the 6th Edition of Doctors 2.0 & You where we'll be talking about collaborative digital health (communities, mobile apps, connected objects, artificial intelligence, 3D printing, and more). Below is Vanessa Carter, patient advocate for facial difference, displaying last year on stage, a copy of one of the 3D versions of her skull which had enabled surgeons to prepare for her operations. Vanessa will be attending this year and is very keen indeed to attend Djamila's sessions.
  22. 22. Making an Impact at 17 on Children with Cancer, thanks to Social Media. Meet Kaat S. at Doctors 2.0 & You #doctors20 Interview by Denise Silber – April 4, 2016 " A kind gesture can reach a wound that only compassion can heal." This quote is the first we read on Kaat Swaartebroecx's website. Thanks to the wonders of technology, I’ve had the great fortune to not only meet this amazing 17 year old from the oldest town in Belgium (population 30 000 today) but to also be able to include her as a speaker at Doctors 2.0 & You 2016. This is the 9th in our series of interviews. That is a photo of Kaat above with some of the Dreamcatchers she has made by hand ; in the interview, Kaat explains how social media has made it possible for her to connect with children suffering from cancer and to bring a form of healing to them and their families. Q1. Would you tell us where you live, where you go to school, and a bit about you ? I am Kaat, 17 years old and I live in Belgium. My town Tongeren is in the southeast corner of the Flemish part. I’m in my last year of high school and I study human sciences. At a very young age (13), I realized that my passion is sharing my love with children who are fighting cancer. When I was 15 ; I had the privilege of starting my own organization with the support of my amazing parents who helped me become who I am. They are loving and caring and I’m very grateful for this ! For the past 2 years, my mission has been to support the sick children and their families, by sending them a handmade, customized dream catcher in their favorite colors, for free, of course. It’s so much more then ‘just a
  23. 23. dreamcatcher’. The hope, love, prayers and support I send bring others to open their heart and let love flow in and beyond. Giving and sharing, supporting and inspiring ! Q2. At what age did you start using Social Media, such as Facebook ? What do you do now with Social Media, besides working on DreamCatchers ? I was about 12 years old when I created my Facebook account. Facebook has been very present and especially valuable in the past 2 years. Before I started my project, I could never have imagined I would be so amazingly thankful for these communication tools, such as Facebook and Instagram. My life, my foundation, would not be the same without these social media tools. The number of children I would have reached by now, which is 800+, would have been tiny in comparison. Thanks to social media I have been able to spread my love and prayers ALL over the world. It would be an understatement to say I’m incredibly thankful that these tools exist and that I’m able to use them on a daily basis ! Q3. How and when did you first notice that there were pages for sick children on Facebook and then get the idea to do something for them ? A now close friend who makes bracelets for sick children inspired me to create something by hand myself for these children. This is how I found a way to share my love with the children. The friend shared some of the pages with me and that’s how I reached the first families. Later on, when people heard about the foundation, parents started to request a dreamcatcher for their child, by sending me a message on the Facebook page, Instagram account or the website. Q4. Besides Social Media apps, are there other Mobile Apps that you use frequently and what are they for ? Not that much so far. Photo editing apps, yes. For example when a child passes away, I edit the picture of the child with the dreamcatcher and the balloon I release in his or her honor. I send it to the parents, along with a message, to show them my ongoing support, love and sympathy. Q5. You’ve created a foundation to support your work of producing and sending DreamCatchers to children around the world. And I know that you see results from what you do. Can you tell us how you find out about these results ? Everytime a child received his/ her DreamCatcher, the parent lets me know it arrived, and usually their reactions are amazing ! They are so thankful for the smile you have put on their child's face, by a simple gesture, full of love, given with a kind and pure heart. They feel the love and care with which it's made and their reactions are so pure and sincere. I feel so humbled and blessed everytime I receive such a heartwarming response. It gives me the energy to keep going ! Parents write me all of a sudden that their child has better and more peaceful nights after
  24. 24. receiving the Dreamcatcher and telling the dreamcatcher legend to the child. A child can easily get attached to such a symbolic and precious thing as a Dreamcatcher. It's very humbling to see your creation having such a great impact on the lives of these families. The psychological effect on the healing process is greater than we could never have ever imagined. I'm still overwhelmed that my simple, loving gesture can bring these kind of breathtaking results. Q6. You learned about Doctors 2.0 & You from a previous Belgian speaker, and you and I have spoken together as well. Why are you excited to be speaking in Paris in May at the 6th Edition ? I am super excited and grateful as well to be able to speak to such a large crowd ! It is amazing to share my passion and love for these kids with so many ! Also being able to spread my message all around the world gives me the feeling that by doing whatever you do with all your heart, you can reach your goal ; mine is to love, care, give and share with those in need. And look how far i've come in such a short period of time, just by following my heart and praying, I continuosly get steered in the right direction. I am blessed beyond words for being able to work with these children. PS Here is the Doctors 2.0 & You stage, with Margot van Fleteren, another amazing young Belgian woman using digital tools for health. Margot told us about Kaat. https://youtu.be/xYKDdgXTnA8 They are more than heroes to me. Feel free to support Dreamcatchers for Golden Warriors foundation And do join us in Paris at Doctors 2.0 & You. May 26-27, 2016. Denise
  25. 25. Meet ex aerospace engineer, turned patient advocate, soon to be MPH : Andrea Borondy Kitts, Doctors 2.0 & You Speaker 2016 #doctors20 Interview by Denise Silber – April 7, 2016 Tenth in the series of interviews leading up to Doctors 2.0 & You, Andrea Borondy Kitts has an exceptional story to tell. A former aerospace engineer, she is now on the cutting edge of lung cancer prevention and using social media to keep up to speed. Learn more by reading my interview with her. Q1. Tell us a bit about yourself. How did you wind up in « digital health and social media ». My husband Dan was diagnosed with lung cancer a year and a half after I retired as an aerospace engineer. So I went online and found the Inspire website with a very active patient and caregiver lung cancer community. I learned about new treatments, suggestions for helping manage his side effects and got a lot of emotional support. About 2 months before Dan died, I decided I wanted to be a lung cancer advocate. I was not even on Facebook nor did I have a smart phone., but I saw a post by Janet Freeman-Daily, inviting everyone to a tweetchat. By the end of the chat, I was hooked on Twitter and on social media for advocacy. It then took doing a class paper on social media and medicine to get me hooked on social media for patient empowerment, prevention and disease management. Q2 What are some of the top apps you use ? The app I use most is Twitter for advocacy, for sharing information, and for connecting people. I use Facebook for advocacy and to keep up on family and friends. For lung cancer risk screening, I love the app by the Hungarian thoracic surgeon, Zalan. The app asks about risk factors, provides a risk score and the location of nearby screening risk sites. I have encouraged Zalan to enter the Doctors 2.0 and
  26. 26. You best app contest. I was just introduced to a project management app, “Bootcamp” , used by the Massachusetts Secondary Prevention Cancer Sub-Committee I’m on. I find it more helpful than Trello. Q3 How is social media in the area of lung cancer prevention and treatment progressing ? I’m very encouraged with the progress I see in social media and lung cancer. The twitter hashtag and tweetchats for the lung cancer community, #LCSM, have more participants. There are several new Facebook groups for the lung cancer community. Last week’s topic was managing metastatic disease and tweeters from all of the cancer twitter communities were invited. Within minutes of new research being published in lung cancer, or new drug being approved by the FDA, the information is posted on Twitter #LCSM with a link. I also see that the physicians that start using social media become more inclusive of patients and in many cases seek out patient input. Q4. You are going to be involved in a hackathon. Tell us about it and how that happened. I was contacted by Ruth Carlos, a radiologist I had worked with virtually on a PCORI proposal for lung cancer screening. She asked if I would be interested in being part of the planning committee for a hackathon. I have been intrigued by hackathons ever since I saw the presentation from last year’s Doctors 2.0 and You conference on a hackathon addressing diabetic patient needs. So, I said yes. In addition to being on the steering committee, I will be a speaker and a judge for the event. See the guest blog post http://e-patients.net/archives/2016/03/a-hackathon-for-open-access-check-it-out.html Q5. You’ve been to Doctors 2.0 & You. What was the experience like? Why do you want to return ? This year, 2016, will be my third time at Doctors 2.0 and You. The first year, I had recently lost my husband and started advocating for lung cancer. As I was googling for MedX, I ran across the Doctors 2.0 and You conference in Paris. I was planning to visit my Dad who lives near Barcelona Spain, so I decided to sign up. I was a little apprehensive, but you Denise reached out to me. You invited me to dinner with some of the conference speakers the night before and in general made me feel very welcome. I met many wonderful and talented people at the conference. Some of the connections resulted in projects and other collaborations. I went back the next year as a speaker and was able to tell people about lung cancer screening and how social media influenced the decision for Medicare coverage. In the audience was a woman from the Institute Curie, a famous cancer hospital in Paris. She had never heard of lung cancer screening. She went back to her hospital and discussed it with her physicians. I sent her information and I know she shared it with the hospital. I look forward to my third year at Doctors 2.0 and You, catching up with old friends and meeting new ones. Q6. How about the experience of participating in « Doctors 2.0 & You » on Twitter. What is that like ? I tweet often to #Doctors20 on topics outside of lung cancer. Primarily on patient empowerment, physician and patient teaming, on new technologies and the latest trends in including patients. The topic tweeted are engaging and provide the most recent information and trends on every facet of social media and medicine.
  27. 27. Q7. And please give us a teaser about what you might discuss in Paris, during your talk ? Our hackathon will address access to peer reviewed medical journal articles. At Doctors 2.0 and You I plan to describe the process, the planning, and the outcomes. We are live tweeting the event #JACRhack. Join us. Here are some of Andrea's photo picks from Doctors 2.0 & You. Follow the hashtag #doctors20 on Twitter. Join Andrea and many more at Doctors 2.0 & You 2016 on May 26-27 in Paris at the beautiful green campus of Cité Universitaire. More info here. See you soon, Denise
  28. 28. Hear from Juliette Renouard, Janssen Digital Engagment Manager, about her job and her experience at Doctors 2.0 & You. #doctors20 Interview by Denise Silber – April 14, 2016 Continuing in our interview series with participants at Doctors 2.0 & You 6th Edition, please meet Juliette Renouard, engineer and self-styled techie, who joined the pharma industry as a digital manager, after a solid experience in telecommunications. Q1. Thank you for accepting the interview Juliette. Please tell us briefly about yourself and your work. My name is Juliette Renouard. I have a master’s degree in engineering and worked for almost 20 years in telecommunications. Two years ago I decided to move to another industry, and I’m currently the Digital Engagement Manager at Janssen. This position has two main activities: to work with marketing and medical teams to launch digital communication and projects and to lead a new program to implement customer experience strategy. Q2. Would you describe yourself as a techie or a geek or neither? What are the top 3 apps you use professionally and or personally ? I’d say rather techie than geek, I’ve been working on new technologies since my first job after school. I can’t live without my mobile phone and I’m quite an Apple addict. Professionally, my favorite Apps are Mail, Linkedin and Twitter. Personally, they are Facebook, Whatsapp and Withings.
  29. 29. Q3. You were with the mobile operator SFR before joining Janssen. How did you become interested in digital health ? When I decided to leave SFR, I had two goals : to take my digital knowledge to an industry outside of telecommunications and to find a more meaningful job. I first attended Meetups on the Internet of Things, a subject that is strongly linked to mobile, and with a particular interest for health solutions. That is how I discovered digital health. Because my professional career had been in a large company, I thought opportunities would be greater in pharmaceutical companies rather than in start-ups. I then learned that the pharma industry had to change its model and was making efforts to develop “beyond the pill” solutions. My transferable skills were in launching mobile apps and website for healthcare professionals and patients and also in managing new projects regarding the improvement of customer experience. So that was what I could bring to a pharma company. Q4. We often hear about the obstacles to pharma success in digital. Are there any categories of digital activities from pharma where you have seen some good results ? Indeed there are many obstacles ! But there is one category, that pharma doesn’t always cover, where we have seen particularly good results : Facebook pages. Our pages have three objectives : to provide quality information about specific diseases, to give advice on how to live better with a disease, and to create a space where patients and families can speak about their disease and feel less alone. We have an excellent engagement rate on these pages, higher than pages in luxury and entertainment, for example, which proves the need and interest for this kind of contents. Furthermore, Janssen has been present and active on Twitter for 2 years with a great increase of followers (1 428 followers) Finally, as it’s a real objective for Janssen France to develop more digital services for patients, physicians, and also for employees, Janssen just launched an internal digital transformation plan few months ago. To develop a digital mindset internally, for example, will help us to reinforce our expertise, and I’m sure will lead to more and more digital activities for both physicians and patients. Q5. What made you decide to attend Doctors 2.0 & You the first time ? I joined Janssen in January 2015 and to be completely honest, I had a very limited knowledge about the health environment and its digital “constraints”. Doctors 2.0 & You seems to me to be the best place to learn more about national and international initiatives, to understand what can (and can’t) be done, and of course to meet digital health experts. Q6. And once you were there at the conference, what did you see, and what made you want to return ? I attended many different sessions, since digital health means so many things : websites and mobile apps, social media and social media listening, serious games, online communities, connected devices, … for both patients and physicians. At the first session I attended, which you moderated actually, I realized the power of some Patient Opinion Leaders (and was, with my naïve view, a bit disappointed by their sometimes “pharma-bashing” speeches…). But the conference really made me understand how digital can change the patient-physicians relationship and help patients with compliance.
  30. 30. A slide from the Patient Opinion Leader Session attended by Juliette That’s the reason why I want to return to Doctors 2.0 & You to find international inspiration, to catch the future trends of digital health and to participate in the GloMAGO contest ! Doctors 2.0 & You was the first international conference in Paris to present Thierry Oquidam and the 3D assistive device developed thanks to eNable/ The image at the top of the post reflects the top tweeters on conference hashtag #doctors20 represented on Symplur.com website. Tweet on that hashtag and join the online community. Join us at Doctors 2.0 & You 6th Edition, being held on the only real campus in Paris proper! See you soon, Denise Silber
  31. 31. From Buenos Aires, Meet Geraldine Gueron PhD, Making Health Data Accessible for Humanity #doctors20 Interview by Denise Silber – April 16, 2016 Interview #12 concerns yet another exceptional individual, Geraldine Gueron, whom I have the great pleasure of introducing in this post. Geraldine, from Buenos Aires, and now citizen of the world has a wonderful vision of how worldwide, health data could be explored for the greater good. Please read on for this fascinating story. Q1. Geraldine, I don’t know where to start to describe who you are. Your Twitter description may be the best : scientist /prostate cancer researcher /mother/ dancer / Co-founder of Wikilife.org and DataDonors.org What can you say? I'm a cancer researcher who wanted to be a dancer, or as I commonly refer of myself : a dancer- scientist. I dance between science, data mining and health. However my proudest achievement in life has been the wonderful family I formed with my husband Matias and my children Olympia (6 years old) and Jerónimo (4 years old). I'm passionate when it comes to health and wellness matters. That is the reason why in 2010, I founded together with Daniel Nofal (an entrepreneur) DataDonors.org, an open data project that aggregates and shares health data over entire lifetimes, generating a growing database of information for the global community. Q2. In our global world, people are collaborating from everywhere. You have lived most of your life in Argentina and I believe it could be an advantage, compared to being in Palo Alto, London, etc. One could also make the opposite argument. What do you think? Although I am based in Buenos Aires, I’ve been traveling my whole life, living for shorter or longer periods of time in other cities such as Leeds UK (I did part of my PhD there) and I currently travel to the US (I am a member of the American Association for Cancer Research and the Prostate Cancer foundation) 4 to 5 times a year, so I consider myself a global citizen. Having said that, I am a proud member of the University of Buenos Aires and CONICET, the National Council for Science and Technology where I pursued my scientific career, a true cradle of brilliant minds. Just as a reminder, we have 3 Nobel Prize winners! Leloir, Houssay and Milstein. And everywhere I go there is an Argentinean researcher…maybe it has to do with our struggles and tenacity to overcome daily problems, maybe with the southern air or the mate… who knows?
  32. 32. Q3. Are you a geek and whether you are or are not, which apps do you use most often, professionally and personally? Who’s NOT a geek nowadays? Personally I use most social networks (Instagram, Twitter, Facebook, Whatsapp, Telegram); professionally I use a few health and sport trackers such as Moves, PTracker, Mood Panda, Nike Plus. Q4. How do your concerns about data protection play into your daily life? Do you refrain from using many of these apps? Or do you accept the risks? Its funny; people are so concerned about privacy matters, but then again they share almost everything on Facebook or other social media platforms. I believe in data sharing and I know the biggest barrier is to keep user´s data anonymous and value their privacy. At Datadonors we encrypt the data. It is clear that people will engage more in data sharing if privacy is guaranteed. It is a good practice to use random codes to replace personal information and use encryption and other IT security practices. I do believe that apps should have clear consent forms in regards to privacy risks. (We can see good examples at some of the new Apple Research Kit apps). However from the consent forms it is still clear that privacy cannot be fully guaranteed. Personally, when choosing apps I recommend that account deletion be guaranteed. I do understand that my information cannot be removed from aggregated data. But if a user wants to leave the app, she/he can withdraw at any time, which means that the app should stop collecting new data, but the coded data that has already been provided and that has already been distributed will not be able to be destroyed or deleted. I like apps that collect minimal contact information. I also recommend consumers to choose apps that have open APIs. Q5. How did your earlier work in cancer research contribute to your developing the vision of Wikilife and DataDonors? I still do cancer research and I believe health is still a mystery. We see perfect healthy people that get terribly sick and on the other hand we see people genetically predisposed to getting a certain disease and not ever getting sick, those whom Dr. Stephen Friend called genetic heroes. What is it that we are missing ? We have an endless stream of new apps and health-tracking devices collecting terabytes of health data points, and this has been possible thanks to the involvement of leading tech companies (Google, Apple, Microsoft, IBM, Intel, etc) all of whom are investing heavily in medicine. They are bringing in technology with deep learning, predictive analytics and contextual computing. So now we have the computational power that can process all this health data more than any human being or any doctor could ever do. We are talking about the capability of artificial intelligence to learn and understand our data in real-time. Q6. Would you give us a peek at your vision of the impact of the DataDonors initiative 10 years from now ? The rise of Wikipedia and other freely available communally developed portals of information has demonstrated that crowdsourcing data and the ample dissemination capabilities of the Internet can accelerate our understanding of health and fuel research in unprecedented ways. The purpose of our project is to build a crowdsourced database of health genomic and lifestyle information that is freely available to all. We aim to become the Wikipedia of health, fostering breakthroughs in science and medicine that will improve the health of millions.
  33. 33. In 10 years time, this program can profoundly impact advancements in health and wellness research, with a special emphasis on prevention. • DataDonors improves the patient/doctor interaction by providing more insights about the patient’s life. • DataDonors provides the global health community with a database that can be used by researchers, scientists and physicians worldwide to help in the generation of new scientific research behind healthy living. • DataDonors empowers the developer’s community so that developers can create tools to analyze and understand health data for the general public. These tools help users to learn more about their behaviors and compare them with others, thus preventing unhealthy habits. • DataDonors profoundly impacts advancements in user’s health and wellness by promoting behavioral improvement through relevant individual and group infographics. Q6. Would you remind us how you find out about Doctors 2.0 & You and what makes you excited about participating ? I'm savvy when it comes to digital health. Doctors 2.0 & you is at the forefront of conferences related to this subject; and it is an enormous privilege to be a part of it this year. Q7. A final couple of questions. Do you do any outreach to interest young women in STEM? And, with so many achievements, such as being identified as an MIT Innovator under 35, how do you stay so grounded ? I recognize that there is still an imbalance between men and women going into STEM careers. Being the mom of a young 6-year-old girl, I make sure I'm a good role model and that she understands she can go into any career she puts her mind to. At least she tells me that she wants to be a scientist! I also try to apply what I do at home with my child in outside situations. For many years I used to serve as a tutor for young kids. I firmly believe that we have to engage girls in STEM, and this can only be done if we promote their curiosity at very early ages. I'm grateful for the MIT Innovator under 35 award. It means we are doing a good job. I'm a social entrepreneur, and the DataDonors endeavor needs support from everyone. When we first started, people thought we were delusional. Why on earth we would waste so much time energy, money on this… and yes… there are people who still think this. But if you have passion, if you have questions that need to be answered and you can try to start unraveling them, then I believe it is worth it. We dream about integrating health data for humanity, so researchers worldwide can make amazing discoveries every single day, and who knows… those discoveries, might save your parents, yourself or even your children in a not very distant future. And bottom line… even if we don’t achieve all our goals, my team and I will have had the enormous privilege of making what seems impossible...possible. A recent interview (in Spanish) with Geraldine. https://youtu.be/73DMPaVzTls Meet Geraldine on May 26-27, 2016 in Paris at Cité Universitaire. See you at Doctors 2.0 & You, Denise Silber
  34. 34. Pharma R&D opens its doors to outside collaboration. Nathalie Jullian, Ipsen will explain how at Doctors 2.0 & You #doctors20 Interview by Denise Silber – April 20, 2016 Interview #13 as we prepare for the 6th edition of Doctors 2.0 & You, is with Nathalie Jullian from Ipsen. Here we broach a new topic in digital health: how a collaborative digital platform, built with an external partner ;-), Dassault Systems, is enabling pharma to make its research and development more inclusive on both the inside and the outside. Shouldn't all functions be able to collaborate in this way, as society becomes more participatory and boundaries diminish ? Nathalie Jullian, 2016 speaker at Doctors 2.0 & You will share the details of how this new platform came into being on May 26 in Paris. And we thank her for taking the time to do the following interview. Q1. Let’s learn more about you professionally, Nathalie. You have some very specialized professional experience : I started my career as a software engineer in the pharmaceutical industry, developing tools for the visualization of 2D and 3D protein structures. After a couple of years, I went back to university and started my PhD at the School of Pharmacy in molecular & structural chemistry, which is all about understanding the relationships between structure and activity. I have been working in that field since then, and there is still a lot to do and to learn. Q2. At Ipsen you are heading up a collaborative R&D platform. What can you tell us about this platform ? Are you aiming for a better collaboration both within Ipsen and between Ipsen and outside experts ? As you know Ipsen is in the middle of a digital transformation strategy. And I am co-leading a project for the implementation of a new collaborative platform for our R&D scientists. The project aims at providing an open and interactive tool to facilitate data sharing and to help navigate through internal proprietary data and public data. One component of the project is a collaborative agreement with Dassault Systèmes, the European multinational software company, and the development of new innovative tools around their 3D Experience platform. Our objectives are to improve internal processes, to support data-driven decision making and thus to accelerate Ipsen performance for the delivery of new therapeutic solutions.
  35. 35. Facilitating collaboration is obviously at the heart of the project, and we mean collaboration with Dassault Systèmes, within Ipsen (between countries, across business areas) and with our external partners. Q3. Do you think collaboration in R&D is the next big trend for pharma ? Moving a drug project forward from research toward development and ultimately to the market has always been a collaborative journey. Many different departments are involved along the process, and seamless collaboration is a key element for success. In the past years, we meant collaboration within the company, while the ecosystem is evolving now with the incorporation of academic experts, biotech companies and other pharmaceutical partners. Also, new collaboration models are emerging with quite a few public private partnerships such as the IMI projects in Europe for example (Innovative Medicine Initiative). We strongly believe that key collaborations will drive future success in our industry. Q4. Are you a geek and whether you are or are not, which apps do you use most often, professionally and personally ? I do not picture myself as a “geek”, although I am familiar with quite a few apps. Having worked with different companies and in various countries, I like LinkedIn as it allows me to keep in touch with my former colleagues. I spend all of my working hours in front of a computer, so of course I do use many business oriented applications, mostly in the Drug Discovery area. Q5. You found out about Doctors 2.0 & You through the Ipsen partnership I believe. What made you excited about participating and what will you be presenting ? It is a great opportunity to discuss with a different audience, and to present some aspects of the changes that are on-going in the pharmaceutical R&D area. Photo below of a design workshop at Doctors 2.0 & You shows international participants learning in collaboration about "empathy" for design See you all soon at Doctors 2.0 & You May 26-27, 2016. Denise Silber

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