The Future of Diabetes Management: New Technologies and Social Networking
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Presentation at UCSF Diabetes Update CME course, Mar 2013, in San Francisco.
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The Future of Diabetes Management: New Technologies and Social Networking
- 1. The Future of Diabetes Management: Social Networking and New Technologies
- 2. 1. Yourfamily members are looking for health information online. 2. Your family members are on social media.
- 3. 1. Yourfriends are looking for health information online. 2. Your friends are on social media.
- 4. 1. Your patients are looking for health information online. 2. Your patients are on social media.
- 6. Goals • Increase awareness of what is already happening • Share my vision for the future of diabetes management • Place social media and social networking within healthcare context • Show you why social networking and diabetes make good partners • Give you practical tips you can try tomorrow
- 7. 2012 IOM Report: Best Care at Lower Cost Smith M, Saunders R, Stuckhardt L, McGinnis JM. Best Care at Lower Cost. National Academies Press; 2012.
- 8. IOM recommendations to reach a “Learning Healthcare System” • Digital capture of the care experience “… for real-time generation and application of knowledge for care improvement.” • Real-time access to knowledge “… continuously and reliably captures, curates, and delivers the best available evidence to guide, support, tailor, and improve clinical decision making…” • Engaged, empowered patients • Transparency • Care continuity
- 10. IOM recommendations to reach a “Learning Healthcare System” • Digital capture of the care experience • Real-time access to knowledge • Engaged, empowered patients “… anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers…” • Transparency • Care continuity “… improved coordination and communication within and across organizations.”
- 12. IOM recommendations to reach a “Learning Healthcare System” • Digital capture of the care experience • Real-time access to knowledge • Engaged, empowered patients “… anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers…” • Transparency • Care continuity “… improved coordination and communication within and across organizations.”
- 15. Why isn’t this sustainable for the future? Patient Clinician • Measurement burden • Office visits rushed • Too much time • Office visits infrequent • Hard to remember the past • Data often incomplete • Forget to bring logbook • Data may be inaccurate • No EHR integration • Cannot query the data
- 22. Bergenstal R et al.: Recommendations for Standardizing Glucose Reporting and Analysis to Optimize Clinical Decision Making in Diabetes: The Ambulatory Glucose Profile (AGP). Diabetes Technology & Therapeutics 2013 Feb
- 30. Reimbursement
- 31. Willingness to pay for online consultation with doctor Hamblin J: If Symptoms Persist, Text Your Doctor [Internet]. The Atlantic 2013 Mar 6 [cited 2013 Mar 11]
- 32. Part 2: Real-time Data (“Push” Medicine) • iBGStar • Dexcom G5 • Telcare • Ginger.io • Glooko
- 34. 9 Data Points 303 Data Points Per Day Per Day
- 35. 810 Data Points/ 27,270 Data Points/ 3 Months 3 Months
- 39. Part 1: Digitization of diabetes data Part 2: Real-time (“Push”) diabetes data PART 3: PATIENT ENGAGEMENT AND SOCIAL NETWORKING
- 40. Evolution of Social Health (from Dr. Bryan Vartabedian) Long • Patients depend on what the doctor tells them ago • Patients find information 1990’s • Patients find each other 2000’s • Information finds patients Now Vartabedian B. Physicians, Risk and Opportunity in the Age of Social Media [Internet]. 33charts.com. 2011 [cited 2013 Feb 14]. Available from: http://33charts.com/2011/12/physicians-risk-opportunity-social-media.html
- 41. What is Social Media? Social Networking? • Social media • One way • Transmit or disseminate information or content to a broad audience • Social Networking • Two way • Sharing information among a community or network of people • Conversations • Online Social Network: a website that allows users to create a profile, connect that profile to other users, and “view and traverse” the connections made throughout the system Boyd DM, Ellison NB. Social Network Sites: Definition, History, and Scholarship. Journal of Computer-Mediated Communication. 2007 Dec 17;13(1):210–30.
- 43. Patients go online for health information • 60% of all adults have looked online for health information • It is the third most popular activity on the internet • The most likely groups of people to do this are: • Caregivers • Those with a recent medical crisis • Those who have experienced a recent or significant change in their physical health • 34% of all adults have read about health in a blog Fox S. The social life of health information, 2011. Pew Research Center. Washington, D.C.: Pew Research Center; 2011 May. Hamblin J: If Symptoms Persist, Text Your Doctor [Internet]. The Atlantic 2013 Mar 6 [cited 2013 Mar 11]
- 44. Patients use mobile • 85% of US adults have a cellphone… ½ are smartphones • One-third of cell phone owners have used their phone to look for health information (up from 17% a few years ago) • 52% of smartphone owners look for health information on their phones • One-fifth of smartphone owners have a health app Fox S, Duggan M. Mobile Health 2012. Washington, D.C.: Pew Research Center; 2012 Nov pages 1–29.
- 45. Patients use social networking • 46% of all adults use social networking sites • The most likely people to use social networking for health: • Female • Young (under 45 years old) • Caucasian • College-educated • Sicker than the general population 1. Idriss SZ et al. Arch Dermatol. 2009 Jan;145(1):46–51. 2. Powell J et al. J. Med. Internet Res. 2011;13(1):e20. 3. Fox S. The social life of health information, 2011. Pew Research Center. Washington, D.C.; 2011 May.
- 46. Offline social networking improves health outcomes • Lack of social ties leads to worse health outcomes • Peer support and support groups improve chronic illness outcomes • Behaviors spread and are shared through “weak ties” 1. Johnson JD, Andrews JE. The evolving role of consumers. Clinical Research Informatics. Springer; 2012;:95–112. 2. van Dam HA et al. Patient Educ Couns. 2005 Oct;59(1):1–12. 3. Christakis NA, Fowler JH. N Engl J Med. 2007 Jul 26;357(4):370–9.
- 48. Types of Social Network Non-healthcare • Facebook online social networks • Twitter Healthcare • PatientsLikeMe specific online social networks • Everyday Health Disease-specific • TuDiabetes online health communities • Glu
- 49. Why do patients like online social networks? • Perceived lack of judgment and anonymity • Finding similar people around the world:18% of Internet users have used the Internet to find patients like them (Fox, 2011) • Information sharing • Emotional support • Access to clinical trials • Self-tracking of health-related data • Ability to query a physician 1. Idriss SZ et al. Arch Dermatol. 2009 Jan;145(1):46–51. 2. Powell J et al. J. Med. Internet Res. 2011;13(1):e20. 3. Griffiths F et al. Soc Sci Med. 2012 Sep 1. 4. Swan M. Int J Environ Res Public Health. 2009 Feb;6(2):492–525.
- 50. Why diabetes and social make the perfect partners PART 4: CONNECTING PATIENTS AND CLINICIANS FOR TRUE CONTINUITY OF CARE
- 51. Potential Benefits of “Push” Medicine Patients • Social network support • Reinforce treatment goals Clinicians • Reminders • Everything on the left side • Real-time feedback and • Real-time clinical data improved understanding of • Social media surveillance impact of certain behaviors • Decision support • Educational resources • Improved connections with • Real-time communication patients with clinician
- 53. Willingness to communicate with doctors primarily online Hamblin J: If Symptoms Persist, Text Your Doctor [Internet]. The Atlantic 2013 Mar 6 [cited 2013 Mar 11]
- 54. Meet patients “where they are” Russell Herder, One in Five Millennials Follow a Healthcare Provider on Social Media
- 55. Why you need to participate • Learn what patients are saying • Obligation to prevent myths from spreading • Cultivate your own digital footprint • Contribute to better illness support networks • Strengthen doctor-patient relationship *** People still trust doctors for information more than anybody else ***
- 56. What can you do tomorrow? • Google yourself (also Google Alerts) • Create a profile for yourself on LinkedIn • Ask your patients what they are using and doing online for health • Pick 5-10 blogs and start reading them • Read social media guidelines • AMA • UCSF Social Media Guidelines
- 59. What can you do tomorrow? • Join Twitter and start following people • Buy your “vanity” domain name • Write guest posts on a blog or start your own blog (easiest with Wordpress) • Create a YouTube channel and post video content • Experiment with looking at data that patients bring in • Go to a HealthCare Technology MeetUp
- 60. Tiptoe into Social Media • Permanent • Public • Professionalism: All rules about offline conduct still apply (ie HIPAA) • Positive
- 65. Barriers • Unclear reimbursement models and business models • Privacy and security • Too much data Better analytics • FDA regulations • Proprietary interests of vendors and lack of interoperability • Medicolegal: Are clinicians responsible for every piece of information? • Data integrity: Can clinicians trust patient-generated data? • Need research validating efficacy
- 66. $15-20M/year from NIH and National Science Foundation for: • Digital Health Information Infrastructure • From Data to Knowledge to Decisions • Empowering Individuals • Sensors, Devices and Robotics
- 67. The recipe for the future of diabetes management 1. Digital data 2. Real-time data 3. Social networking and engaged patients 4. True continuity of care that connects patients, clinical data, and clinicians
Notes de l'éditeur
- Ways to reach meHandout contains links, references, useful informationSlides from todays talk will be on SlideShareNo disclosures or conflictsWife is pregnantOb and nice hardcover book from Mayo ClinicBook is sitting on top of shelf in original Amazon packagingDr. Google to look for answers to all her questions
- May be obvious to many of you and contentious to someStatistics coming later
- If designed intuitively, anybody can use technology comfortablyIn Fall 2010, someone over 90 years old spurred me to start using social media as a physician90 yr old man with heart failureDistracted, textingTrying to get home for LinkedIn IPOEmbarassed me and I went home to sign up for Twitter and started using LinkedIn
- IOM report, worth reading exec summaryHealthcare researchers do science to generate evidence, which in turn is used to guide clinical careLots of inefficiencies in the system as we move discoveries to clinical evidence to provide careAnd when care is provided, the care experience is not captured wellHopefully nobody made you believe an EHR would fix this by itself
- Learning HealthCare system: connects personal and population data to practitioners and researchers to enhance knowledge base on effectiveness of interventions and provide real-time guidanceFramework for understanding where diabetes management needs to go1st step is digital capture of data, it cant live in your file room or on a dusty shelfTarget and Safeway can figure out when when woman is pregnantGas station minimarket transaction… all the data is lostHealthcare is more like the gas station and needs to become more like Target2nd step is real-time data captureThis first means accessing clinical information quicklyAlso means accessing medical literature and evidence to guide decisions
- Going to look for Harrisons is too inefficientInformation needs to be intelligently brought in front of you
- Patients cannot be passive bystandersMany new tools available for consumers no longer need prescription or orderCuriosity + internet + credit card = self-management of health (ie $99 23andMe)
- Issue of Health Affairs dedicated to this idea
- Transparency– more comfortable with people seeing what we are doingCare continuity– traditional definition and new definition which means accounting for the 99% of the time that the patient is at homeSo… how are we doing in diabetes management today in terms of reaching a learning healthcare system?
- This is what a lot of diabetes management looks like today
- Logbook is as old as I amWhy can’t this be the way of the future?
- Paper is good in that it is flexible, cheap, allows active patient engagement. For clinicians paper is comfortable and familiar.But there are a number of issues with the paper logbook
- So where we are often left in today’s world is hereWe are most often in the dark about our patients lives at homeWe might have snippets of information but it is mostly fuzzy4 hours a year with us and nearly 9000 hours a year self-managing diabetes
- So the first order of business in creating learning healthcare system for diabetes is to capture all the data digitallyHave to bring each of these components into focus
- Many of you are thinking that you don’t use paper logbooks, that your data is already digitalIt is true, for blood glucoses, the data is digital alreadyBut there are problems with thisFirst, we know that a large percentage of our patients don’t download their meters
- Second, when we do get downloads, The data lives in silosNo standards between vendors for data usageLike the early days of the internet when you had to use either Compuserve or AOL or Prodigy, before the web was integrated together
- Your office has a tangle of wires that looks something like this,And when you do download the information, you get something that looks like this
- One of the effects of lack of standardizationEvery company has its own way of displaying the informationLeaves clinicians and patients confusedA majority of patients don’t even download their information
- Need more standardization in the way that glucose data is analyzed. One recent attempt is from a large group of diabetes technology expertsAmbulatory Glucose Profile
- Insulin pumps already collect digital dataInsulin pen prototype from MITFor oral medications, low tech smart bottle capOr high tech Proteus patch with sensors in pills
- Activity is a 3rd important componentHuge market now of consumer devicesFuelBand, Shine, RunKeeperI wear a FitBit
- For metabolic synd/type 2 diabetes, high level view of activity might be helpfulMotivationAccountabilityFeedback
- Or you could get more discrete minute-to-minute data that you could match up with blood glucosesHelpful especially in type 1 diabetes
- I was at best buy last week and saw two aisles full of activity monitors and other self-tracking devices for consumers
- Food is probably going to be the final frontier, the hardest technologically and also in terms of burden on the patientCalorieKing forces patient to manually enterPhotos of food might work some day but still requires patient to take photoOne cool idea is the HapiFork which gives feedback on speed of eatingLocation information could help speed things up, like only give you the food options available at your locationAlso retrospectively you could look back and see what happened to BGs when hundreds of people ate that item
- So, we need to bring together these different data streams and integrate them. Look for patterns, help decipher what is happening with our patients.Analytics will be needed to help spot patterns and show us the most relevant data.
- If I don’t talk about this now, you wont listen to the rest of my talkConcierge or boutique practice, you might be able to bill extra for this as a serviceCapitated system, you are responsible for populationIf you depend on patients coming to office for reimbursement, may not be realistic yet, but payment models are changingEven at UCSF we are now experimenting with reimbursement for telephone visits
- Survey from the Atlantic that 1/3 of people would pay for online consultations with doctorsNo difference by incomeNo difference by age over or under 30
- Part 2 is real-time dataNot enough for the information to be digitalIf patients don’t bring their meter in or do the download its of little valueMore and more devices available that help patients “push” information to cliniciansPush medicine is a paradigm change from the days when we pulled information in that we wantediBGStar and Telcare– smartphone connected BG metersGlooko – cable to connect most meters to smartphoneDexcom G5 will connect to smartphoneNew types of data too, not just the BG, insulin, food, activity we’ve talked aboutGinger.io– passively tracks things like how many different people you call each day to see your depression level and chronic disease management
- Real-time data allows us to capitalize on Teachable MomentTargeted advice or education to patients when it is relevantSend information about dosing insulin for eating pizza at the pizza restaurantFor clinicians, teachable moment could mean clinical decision support that occurs in your workflow, with actionable recommendations, while you are making a clinical decision with a patient
- The downside to real-time data is that there is a lot of it. T1DM patient with 4 injections a day and 5 glucose readings = 9 data pointsT1DM patient with pump changing doses 10 times a day, 5 boluses for meals, and CGM with q5 min glucose = 303 data point
- And with the new sources of data, there are even more than 27,000 points
- The danger is that we are left feeling like this
- Or like this classic I Love Lucy episode where the chocolates come pouring down the conveyor belt faster than they can keep up
- Just like the crashing wave, water is not the enemy, and neither is data. Water that comes untamed and unfiltered is the problem. Same with data.Need analytics and big data tools to make information manageableManipulate the data to suit our needs and our workflow
- One of the other ways to manage all of this information is to realize that we cannot and should not manage it all ourselvesPatients are going to need to be more engaged and activatedWith diabetes, more than 99% of the time the patient is self-managing.We spend 3-4 hours a year with them, and they spend 9000 hours a year self-managing
- Years ago, doctors told patients what to do and they listenedThen during Health 1.0 patients began to find information onlineThen patients began to network online and share information, Health 2.0Now information is actually reaching patients without them even having to go look for itDemocratization of information not just in HealthCare– car buying, real estate– information asymmetry is over
- Think about a news article that a friend of yours may have shared with you recently onlineMany ways that that information gets shared and spread aroundTraditional media has broadest reachBut then information gets amplified and shared in variety of channelsOpen networks eg Twitter or blogsClosed networks eg FacebookIndividual email listsOk, time for those statistics I promised earlier….
- 40% of patients use internet for self-diagnosisAlso use it for hospital and physician ratings, for general health informationThird most popular activity on the Internet
- Online peer groupsTrying to replicate Diabetes Prevention Program
- Non-healthcare related OSNs– “front stage,” portray as healthy and happyHealthcare specific OSNs- “back stage,” more likely to vent and be honest about health problems
- Anonymity, perceived lack of judgmentFind people around the world like you, not limited by geography any more; can build advocacy communitiesShare information– “street level” information like how to run a marathonEmotional support– shared experiences, failure, successes; Motivation; accountability to others; reassuranceWoman in her 30s who is young mother with T1D in 2 Facebook groups with other similar mothers for supportAccess to clinical trials– recruitment for traditional trials; crowdsourced research where people pool data together Self-tracking of health data – 1/3 of internet users have tried thisAbility to query a physician
- InteroperabilityEliminating silosFree flow of data from ER->clinic->hospitalBut now also includes flow of data with the home
- Many potential benefits for patients and cliniciansPatients wont have to wait months to see us for issuesMore touches by healthcare systemBetter self-management skills for patients
- About 1/3 of people overall are willing to make their primary form of communication with doctor be onlineMore prevalent among younger people and slightly more prevalent among wealthier people
- More than one in five young adults follow a healthcare provider on social mediaWe need to try to meet them where they are, which is onlinePeople in their 20s are now being called The New Adolescents, as they face health risks, are underinsured, and feel invincibleMaybe using online tools is one way we can reach this population and bring them into the healthcare system
- Learn what patients are saying, can get your finger on the pulse of information that is spreading aroundPrevent myths from spreading… eg google for autism and vaccines or for diabetes and cure with vitamins and find real health information instead of junkStudy from Facebook diabetes groups showed 27% of posts explicitly promoted products, often “natural cures”We can be part of the solution to the presence of untrue information onlinePeople still trust doctor most for health information. Patients tend to look for information online to do initial searches for information or to confirm what the doctor has told them. They are not generally trying to become independent experts.
- This isnt because he is well-knownAnybody can make a Twitter profile or a blog or a LinkedIn profile or have their photo available online
- Learn the etiquette of how things work onlineMy dad practices adolescent medicine and made this mistake and his first tweet contained the words “Hot New White Paper about Young Adults”… told him this might get flagged as spam for pornographyPermanent– assume things cannot be taken back even if you push deletePublic– assume that everyone in the world has access to what you write. Anonymity is an illusion. Don’t fall into the trap of thinking you can say things that you wouldn’t normally say in public.Professional– do not discuss patient specific issues. Period.
- Great example recently of all of the issuesOn the cutting edgeWatching Lakers game sitting on couchCame across Twitter
- People discussing Afib vs Aflutter vs Artifact
- Some people telling him to go offline and discuss this with his physician
- This case brings up many of the existing barriers to reaching a more modern era of diabetes management
- Luckily to fill void of lack of research in these areas, NIH and NSF are collaboratingThis came out about two weeks agoDo these four categories look familiar?