Designing Data for Dignity StrataRx

Editor's Notes

• #6: Leslie Patricelli
• #11: http://jama.jamanetwork.com/article.aspx?articleid=1187932he drawing was unmistakable. It showed the artist—a 7-year-old girl—on the examining table. Her older sister was seated nearby in a chair, as was her mother, cradling her baby sister. The doctor sat staring at the computer, his back to the patient—and everyone else. All were smiling. The picture was carefully drawn with beautiful colors and details, and you couldn’t miss the message. When he saw the drawing, the physician wrote a caption for it: “The economic stimulus bill has directed $20 billion to health care information technology, largely funding electronic medical record incentives. I wonder how much this technology will really cost?”
• #18: INCUMBENTS deploy top down approaches that comply with regulation, and meet the needs of payers and providers, but famously fail to deliver engaging patient and practitioner experiencesNEW ENTRANTS want to disrupt the entire system, but often struggle to understand deep unmet patient needs, and how to demonstrate evidence-based outcomes
• #22: seemingly innocuous innovation that when combined with other services can completely disrupt the health care system (khosla) More like seemingly annoying, distracting, and irrelevant innovation at the outset.But the key point is that we’re in the beginning of what it to become a technology wave. And the internet kids are wave riders, and are coming up with some of the more creative provocations.
• #25: Location is interesting, running experiments like these: - location + weather trends: raining for 3 days, send a recommendation for a walk / run / bike (depending on what they like to do) on the first sunny day- we notice a slow down in social media posts and send some generic positive encouragement (not recommendations)- calendar driven events have been interesting -- sending activity recommendations after July 4, birthdays, Memorial Day, Labor Day- if a friend is tweeting about fitbit, we suggest one to you- if you generally weigh yourself 1x/week, we give double points for weighing in after a workout, which bizarrely worked well- we haven't done these yet, but will try them soon: --- if they are away from their home city, but we're going to recommend healthy places in the new place they're in --- age; sending education about drivers licenses when a diabetic turns 13
• #26: ARIELY: We need to simulate a better future mental state for remembering. Data entry is not that simulation.Intrinsic information seems increasingly at risk Problem solving as pattern completionAlertness and resilience http://www.eecs.wsu.edu/~cook/pubs/ieee13.pdfA Survey on Ambient Intelligence in Health CareGiovanni Acampora, Member, IEEE, Diane J. Cook, Fellow, IEEE, ParisaRashidi, Member, IEEE,Athanasios V. Vasilakos, Member, IEEE
• #27: HT: @lily ARIELY: We need to simulate a better future mental state for remembering. Data entry is not that simulation. Ambient Intelligence (AmI) is a new paradigm in information technology aimed at empowering people’s capabilitiesby the means of digital environments that are sensitive, adaptive, and responsive to human needs, habits, gestures, and emotions.Context Aware: It exploits the contextual and situational information. Personalized: It is personalized and tailored to the needs of each individual. Anticipatory: It can anticipate the needs of an individual without the conscious mediation of the individual. Adaptive: It adapts to the changing needs of individuals. Ubiquity: It is embedded and is integrated into our everyday environments. Transparency: It recedes into the background of our daily life in an unobtrusive wayhttp://www.eecs.wsu.edu/~cook/pubs/ieee13.pdfA Survey on Ambient Intelligence in Health CareGiovanni Acampora, Member, IEEE, Diane J. Cook, Fellow, IEEE, ParisaRashidi, Member, IEEE,Athanasios V. Vasilakos, Member, IEEE
• #28: From Ambient Commons: Soldiers and surgeons alike tend to prize their “situational awareness.” The ability to read a context on the fly can mean life or death to these experts. Where a merely competent person would play by the rules, and expert knows when not to and directly plays the situation. Andy Clark (philosopher and cog scientist) and David Chalmers (philosopher) call embodied skills “the extended mind” or “extended cognition.” Engaged action occurs in “memory as pattern re-creation instead of data retrieval; problem solving as pattern completion and transformation\; the environment as an active resource, and not just a domain problem; and the body as part of the computational loop, not just an input device. _
• #30: http://www.aami.org/publications/bit/2012/JA_alarm_fatigue.pdfMonitor alarm fatigue: An Integrative Review. Maria Cvach, John’s Hopkins Hospital. http://www.farmpd.com/Portals/53820/images/auditory-perception-3.jpghttp://www.aami.org/publications/bit/2012/JA_alarm_fatigue.pdfThe constant beeping of alarms on patient monitors de­sensitizes caregivers, causing them to ignore or even disable the sounds that signal that patients may be in danger.
• #31: http://hplusmagazine.com/sites/default/files/images/articles/genome-sequence.jpgFROM Overcome the worldTO Understand the worldDon’t just add another interruptionOverconsumption of data. Diet. Scarcity. Abundance. Data that do not inform only produce anxiety.
• #32: https://www.dragoninnovation.com/projects/19-mimo
• #33: http://www.ayasdi.com/_downloads/Topology_Based_Data_Analysis_Identifies_a_Subgroup_of_Breast_Cancer_with_a_unique_mutational_profile_and_excellent_survival.pdfBecause the computational part of dataanalysis ultimately identifies shape characteristics in the organization of data sets, the mathematics of shape recognition in highdimensions continues to be a crucial part of data analysis. Thisarticle introduces a method that extracts information from high throughput microarray data and, by using topology, providesgreater depth of information than current analytic techniques. Themethod, termed Progression Analysis of Disease (PAD), first identifies robust aspects of cluster analysis, then goes deeper to finda multitude of biologically meaningful shape characteristics inthese data.
• #35: http://i.cdn.turner.com/cnn/2011/HEALTH/07/28/ep.smartphone.obsessed.cohen/t1larg.smartphones.gi.jpg
• #36: It’s a great way of getting people to do the wrong things for the right reasons. Toothpaste is a vehicle to get you to use toothbrushes. You want minty refreshing taste now, and you benefit from tooth health later. P&G got us to start craving toothpaste.
• #39: Motivators are those which are an inherent part of the human experience everywhere:http://bjfogg.com/fbm_files/page4_1.pdfsensation – pleasure/painanticipation – hope/fearsocial cohesion – social acceptance/rejection
• #42: Today healthcare is episodic. Care happens in the doctor’s office, with big gaps between visits. It’s an incomplete picture. But what if we could fill those gaps with data from the sensors in your phone. This information helps us better understand the relationship between behavior and health.
• #44: http://irevolution.net/2013/09/23/principles-for-big-data-and-resilience/Eliminating “preexisting conditions” under accountable care does not lead directly to people wanting to openly share all of their health data.There is still social stigma, fear that such information could make a person un or less employable or less desirable as a mate.This is critically important for new entrants in health tech – health has room for emergent outcomes, but not mercenary moral relativity.
• #45: Asthmopolis propeller
• #46: Permission marketing is the privilege (not the right) of delivering anticipated, personal and relevant messages to people who actually want to get them. _Seth GodinInformed consent is a process for getting permission before conducting a healthcare intervention on a person.Internet kids need to pause before jumping in with nudge experiments and behavioral economics hacks. And not continue on the slippery path of moral relativity as it relates to personal privacy.There is much more at stake when we build these systems with our health in mind.
• #49: Increased chart reviewing led to decreases in patient understanding, possibly because this activity interferes with making eye-contact and communication in general.http://www.sciencedirect.com/science/article/pii/027795369400155MGoals for ambient intelligence: facilitate human contact.oriented towards community and cultural enhancement.help to build knowledge and skills for work, better quality of work, citizenship and consumer choice.inspire trust and confidence.be consistent with long term sustainability — personal, societal and environmental — and with lifelong learning.be made easy to live with and controllable by ordinary people.
• #51: http://www.common-sensing.com/
• #53:  Often we find ways to move closer to our desired state without changing our mental model. •  Learning to use life’s raw experiences to adjust our entrenched worldviews is hard and, therefore, uncommon. •  Experience, after all, provides only data, the raw ingredients for learning, not knowledge. •  Single loop: we learn to tweak our decisions without altering our mental models or their associated decision rules. •  (A thermostat that sense when it is too hot or cold).
• #56: •  Learning that occurs when we use the feedback information to enhance our fundamental understanding of the decision task. •  Learning is discovery of mental maps and decision rules that are better aligned with the decision task at hand.
• #57: Agency of Decayhttp://www.flickr.com/photos/jcn/8282803988/
• #61: The Interaction paradigms have not been designed to support positive peer pressure,Despite their only being “like” buttons and no “dislike” buttons anywhere.What the internet kids do realize though – is that they are not just designing for an individual data input experience.Like so many incumbent health IT systems.They recognize the role of peers and social systems, and design not just for successful individual task completion,But for that moment of exchange between two people.
• #62: In health, we have a huge untapped deep need to serve the caregivers.Yet most systems are not designed with caregivers in mind.There are many new entrant startups focusing on the caregiver problem head-on.But I predict that caregivers will start being addressed as a social interaction challenge.How do we design systems that solve the needs of caregivers – stressed out, no time, confused, overwhelmed emotionally.Systems that encourage positive, encouraging caregivers, but also weed out or diminish those peers or family members that are not so helpfulSystems that are designed for successful interactions between a caregiver and a patient, the doctor, the nurse, the insurance company, and with other supportive caregivers. Skyrocketing Alzheimer's rates to burden world's caregivers, More than 35 million people around the world live with dementia, including its most common form Alzheimer's disease. That number is expected to more than triple by 2050, to 115 million people with dementia.http://www.cbsnews.com/8301-204_162-57603932/skyrocketing-alzheimers-rates-to-burden-worlds-caregivers-study-says/
• #63: http://mobihealthnews.com/23817/va-launches-caregiver-pilot-with-10-new-apps/There are four kinds of people in this world: Those who have been caregiversThose who currently are caregiversThose who will be caregiversAnd those who need caregivers