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Phd webinar 25sep2012
1. From the iPhone to the EMR:
Can patients’ personal health data help improve their
clinical care?
Learnings from Project HealthDesign
A national program of the Robert Wood Johnson Foundation
2. Stephen Downs,
SM, FACMI
Chief Technology and
Information Officer
Robert Wood Johnson
Foundation
3.
4. Project HealthDesign
• Engaged five teams to demonstrate a new vision for improved patient care
through integration of patient-generated health data
• Explored the technical, legal and policy implications of incorporating patient
generated data in health care
5. • BreathEasy
Adults with asthma
• Chronology.MD
Young adults with Crohn’s Disease
• dwellSense
Elders at risk of cognitive decline
• Estrellita
High-risk infants and their caregivers
• iN Touch
Low-income teens and young adults managing obesity
6. Patricia Flatley
Brennan,
RN, PhD
National Program Director,
Project HealthDesign
University of
Wisconsin—Madison
10. Chronology.MD: A mobile application for adults with
inflammatory bowel disease
“Every aspect of this work is focused
on making patient communications
of a complex health condition easier”
11. iN Touch: ODLs via mobile platforms for youth with obesity and
depression
“We’ll put the health decisions in
teens’ hands and extend the
support of the clinicians beyond
the clinic.”
12. BreathEasy: An application for adults with asthma & depression or
anxiety
“What we're developing will
enable patients and clinicians to
communicate more quickly and
easily . . .”
15. Why we should go forward – Patient View
• ‘I don’t feel so alone’ (patient w/ Crohn’s)
• ‘My quality of life has gone way up’. . . ‘my weight is up’ . . .
‘I’m not vomiting every day’
• ‘It’s easier to summarize and share between-visit health
events and health status’
• ‘good intentions to use the app, but not enough energy at
the end of the day’ (parents of twin at-risk infants and two pre-
school kids)
• ‘I charge the study phone before my personal cell’
• ‘missed more medication doses than I expected’ (elder at risk)
16. Why we should go forward – Provider View
• Patient visits and prescriptions decreased
• Able to identify when medications weren’t being
taken or were taken incorrectly
• Adjusted medication regimens
• Motivated patients to adhere to treatment plan
• Provided a measure of cognitive and functional
performance over time
24. Stephen
Rothemich,
MD
Co-Principal
Investigator, BreathEasy
Virginia Commonwealth
University
25.
26. Example 1: Significant improvement after a controller
medication was started without an office visit
(early 30’s, smoker, no other significant health issues)
27. Example 2: Different diagnosis suspected, escalated to
specialist care, immunotherapy planned
(early 50’s with comorbid hypertension, depression, chronic pain, and lupus erythematous)
28. Impact on Clinical Care
Provided clinically useful information
Patient education needs addressed
Therapy escalated
Diagnoses changed
Manageable for small numbers of participants
Triage model insulated docs from data overload
Built on existing workflow for incoming messages
Large numbers would require staffing changes
Opportunities for better EMR integration
Potential tool for chronic disease management
29. Michael
Christopher
Gibbons,
MD, MPH
National Advisory Council,
Project HealthDesign
Johns Hopkins Medical
Institutions
30. Rapidly Evolving Society
• Prevalence of Chronic Disease
• Burgeoning of the Senior population
• Increasing Longevity
• Rising Healthcare Costs
• Growing population of Minorities,
immigrants & underserved
31. Personal Health Records
Early Innovators
• Google Health
• Microsoft Health Vault
• Patient Portals
• Kaiser Permanente
• Practice Fusion
• My Personal Health Record
• Technical Innovators (collaboration)
• Patients Like Me
• Cure Together
32. RWJF Contribution to the PHR evolution
Functional Innovation
• Many types of data
• Variety of platforms
• Knowledge Innovation
• Observations of Daily living
33. Future PHR Opportunities
Businesses & Developers
• Technically Enhanced Solutions
• Functionally Superior Solutions
• User Focused Solutions
• Improved health outcomes through
• Improved Usability
• Higher User satisfaction
• Better User Experiences
What we have done through Project HealthDesign is piloted how data about observations of daily living – or ODLs – can be collected, interpreted, and acted upon by patients and clinicians. ODLs can include information about things that are personally meaningful to people and that indicate how they feel – such as mood, pain, appetite, sleeping patterns, energy levels, exercise, etc.
The five Round 2 Project HealthDesign teams worked with real patients to use new technologies such as smartphones and iPads to collect observations of daily living and share selected ODL data with clinicians in order to improve care.My project involved [provide one-sentence description of your project]. I’m going to talk more about it in a minute.
Out of curiosity, I entered the ODLs that the five Round 2 teams will collect into Wordle.What I see is a mix of qualitative (subjective) and quantitative (objective) data.It also points out how important the grantees attention to analysis, interpretation of the raw data is; as well as the display of the analyzed or trended data.
Photo: Anind Dey, Associate Professor, and PhD student Matthew Lee, both of the Human Computer Interaction department at Carnegie Mellon, with their smart pill boxCredit: Pittsburgh Post-Gazzette It is often hard to detect subtle changes in everyday activities – such as the loss of the ability to make a sandwich, dial a phone, or take medications correctly – that could indicate the onset of dementia or physical decline in adults who live alone. Carnegie Mellon Universitywill develop and evaluate new technology that will monitor the routine of older individuals who have arthritis and are at risk for cognitive decline, providing trustworthy data for long-term functional assessment and treatment. The technology will monitor routine tasks such as taking medication, movement around the home and cooking. It will then present the information to key stakeholders including participants, caregivers and clinicians, so that they can detect and better understand the individual’s changing cognitive and physical abilities. By identifying decline at an early stage, caregivers will have a chance to halt or even reverse deterioration that might otherwise result in an unsafe living situation and ultimately require the person to be institutionalized.
Photo: The FitBaby team constructing sensors to place in cribs to observe flatus Early-life health decisions for pre-term, low birth weight babies can make a big difference in how well they do down the road. The University of California, Irvine and Charles Drew University will create a mobile device for collecting information from pre-term low birth weight infants and their primary caregivers that will allow them to more easily interface with their health care providers to improve care and communication. Caregivers will use a specially designed mobile device, FitBaby, to record observations of daily living (ODLs) such as the baby’s temperament, exercise, feeding and sleeping schedules, as well as the caregiver’s stress level and attitude swings. Providing nearly real-time data to clinicians will help alert them to early signs of health problems, which is crucial in treating low birth weight infants. The project is unique both in its goals of incorporating patient-generated information into a clinical setting and also because it collects information about the primary patients and their caregivers.
Quote: “easier…by weaving together innovative technologies that enhance and extend the patient voice.”Nikolai Kirienko, Project Director, University of California, BerkeleyThere are 600,000 people in the United States who suffer from the digestive disorder Crohn’s disease. The disease is most prevalent in young adults ages 18 to 35 and can not only be complicated and expensive to treat but also has significant social and emotional implications. The University of California, Berkeley in partnership with The Healthy Communities Foundation and the University of California, San Francisco will help young adults who suffer from the disease create visual narratives of their condition and treatment to provide concrete feedback to providers about how they feel from day to day. The project will include patients tracking observations of daily living (ODLs) such as physical symptoms like diarrhea, bleeding and profound weight loss, along with more complex social and emotional observations. The information will then be shared with the provider and discussed during their clinical appointments to help the patient and clinician get a more accurate picture of what’s happening between appointments with the goal of being able to reduce exacerbation of symptoms and undesired consequences of treatment, ultimately increasing the quality of the patient’s life and care.
Quote: Katherine Kim, Co-Principal Investigator, San Francisco State UniversityYouth from low-income backgrounds suffer disproportionately high rates of obesity. San Francisco State University will examine the potential of collecting observations of daily living (ODLs) via smartphones for low-income teens that are simultaneously managing obesity and depression. Partnering with San Francisco General Hospital's Teen Clinic the project will utilize smartphone technology – wildly popular among young people – to make monitoring ODLs such as physical activity, food intake and mood easier and more convenient, thus making it more likely that they will enter the requested data at the appropriate times. In addition, the technology will allow the teens to easily share the data with their care team in order to help set health goals, track their progress and ultimately improve their physical and mental health.
Quote: “easily…and more accurately track environmental and behavioral effects on our health.“Barbara L. Massoudi, Principal Investigator, RTI InternationalAsthma is a common, chronic illness, affecting over 23 million adults in this country. In addition to respiratory symptoms associated with the disease, individuals with asthma are also more likely to experience depression and anxiety. RTI International and Virginia Commonwealth University will design a personal health record application, BreathEasy, building on the latest clinical guidelines for treatment and self-monitoring for patients with asthma and depression. Patients will interact with the application through smartphone mobile devices and biomonitors to capture and report observations of daily living (ODLs) such as use of controller and rescue medications, symptom levels, quality of life and smoking. Clinicians will utilize a Web-based dashboard providing simple analysis and visualization tools that allow them to quickly view their patients’ data, evaluate their health status and communicate any changes in treatment or monitoring. By providing a clearer picture of their health in everyday life, the ODLs will be used by both the patients and their clinicians to make lifestyle and treatment adjustments that will better manage their asthma and depression.