Welcome ONC Overview of Consumer ehealth Initiatives Toward Data Liberation. National Coordinator for Health Information Technology
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4 Welcome ONC Overview of Consumer ehealth Initiatives Toward Data Liberation Farzad Mostashari National Coordinator for Health Information Technology Lygeia Ricciardi Acting Director of the Office of Consumer ehealth, ONC HDIFORUM.ORG #HEALTHDATA
5 HDIFORUM.ORG #HEALTHDATA ACCESS: Bright Spots in Data Access for Consumers Moderator Sarah Krüg CEO/Executive Director, Cancer 101 Robert Fortini Vice President, Chief Clinical Officer, Bon Secours Virginia Medical Group Anne LeMaistre Senior Director Clinical Information Systems and CMIO, Ascension Health Bill Feller Vice President Innovations and R&D, United Health Group Andrew VanZee State Health IT Director, State of Indiana Karen Herzog Patient Advocate
6 ACTION: Examples of Innovative Uses of Data HDIFORUM.ORG #HEALTHDATA Demo: Southeast Minnesota Beacon Community Patient Reported Outcome (PRO) Quality of Life (QOL) Tool for Diabetes CHALLENGES PAST: Highlight Past Challenges CHALLENGES PRESENT: Announce a New Winner CHALLENGES FUTURE: Announcing New Challenges Advisory Board s Challenge ONC/VA s Blue Button Mash-up Challenge
7 SE Minnesota Beacon Community Patient Reported Outcomes & Quality of Life June 5, 2012 Lacey A. Hart, MBA, PMP Mayo Clinic, Science of Healthcare Delivery Director, Project Management Office Program Manager, SE MN Beacon & SHARP No financial disclosures No conflicts to declare
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9 Healthcare Transformation IT Patient Outcomes Enable Knowledge discovery in world of data Patient & Community Voice New models ONC Pillars: Build & Strengthen Improve Test Innovation
10 Guiding Values Ensuring the values and preferences of informed patients are brought into our program through meaningful conversation.
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12 QOL PROs as an integrated vital sign Patient Clinical profile intake Patient-reported QOL-related assessment Prophylactic interventions for PRO QOL-related domains Treatment Real-time Monitoring of PRO QOL-related domains Triggered supportive care or treatment modification Reduced emergent care Improved survival Improved quality of life
13 Synergistic Community Care Patient comes in for PCP appointment Olmsted Medical PCP CCD Mayo Clinic CCD Desk staff administer PROQOL Tool PCP reviews PROQOL uses Med Decision Aid for new med choices Patient admitted to a Mayo Clinic Hospital Patient discharged from Hospital Physician connects via peer-to-peer network & reviews CCD PH case manager follows up in home care setting Pulls CCD s Reconciles Medication Administers PROQOL Results can be viewed by PCP at next visit
14 PRO QOL WEB TOOL See it in ACTION APPS Expo Booth #45
15 Charting on PH-Doc
16 Reports, Treatment Pathways & Trends
17 Beacon PRO Interface with other efforts R01 grant to compare PROMIS, PRO-CTCAE, and LASA assessments ACOSOG/CALGB/NCCTG cooperative group involving real-time PRO-based treatment and methods research Research PRO real-time initiatives at Mayo Scott/Jax & clinical program in Rochester Other Beacon site pilots: Utah, NOLA, Maine, North Carolina,
18 Beacon PRO 2013 Impact in SE MN PROs can improve annually: 1,800 patients have improved Insulin dosage and monitoring 4,500 patients receive lifestyle counseling 6,300 families are educated on how to help the patient with diabetes 13,500 complications identified It is about time we were asked about these things beyond just glucose & A1C levels. (Type I diabetes patient For over 30 years)
19 PROQOL Video Presentation Provider Fact-Sheet Paper version of Tool PROQOL Clinical Pathways-Sample PROQOL Workflow-Sample PROQOL IRB Protocol Sample 18
20 ACTION: Examples of Innovative Uses of Data HDIFORUM.ORG #HEALTHDATA Demo: Southeast Minnesota Beacon Community Patient Reported Outcome (PRO) Quality of Life (QOL) Tool for Diabetes CHALLENGES PAST: Highlight Past Challenges CHALLENGES PRESENT: Announce a New Winner CHALLENGES FUTURE: Announcing New Challenges Advisory Board s Challenge ONC/VA s Blue Button Mash-up Challenge
21 ACTION: Examples of Innovative Uses of Data HDIFORUM.ORG #HEALTHDATA Demo: Southeast Minnesota Beacon Community Patient Reported Outcome (PRO) Quality of Life (QOL) Tool for Diabetes CHALLENGES PAST: Highlight Past Challenges CHALLENGES PRESENT: Announce a New Winner CHALLENGES FUTURE: Announcing New Challenges Advisory Board s Challenge ONC/VA s Blue Button Mash-up Challenge
22 ACTION: Examples of Innovative Uses of Data HDIFORUM.ORG #HEALTHDATA Demo: Southeast Minnesota Beacon Community Patient Reported Outcome (PRO) Quality of Life (QOL) Tool for Diabetes CHALLENGES PAST: Highlight Past Challenges CHALLENGES PRESENT: Announce a New Winner CHALLENGES FUTURE: Announcing New Challenges Advisory Board s Challenge ONC/VA s Blue Button Mash-up Challenge
23 Break HDIFORUM.ORG #HEALTHDATA
24 HDIFORUM.ORG #HEALTHDATA ATTITUDES: Fanning the Flames of Consumer Demand Moderator Judy Murphy Deputy National Coordinator of Policy and Programs, ONC Alan Greene Society for Participatory Medicine Ellen Makar Director, Nursing and Clinical Transformation, Yale New Haven Hospital, Alliance for Nursing Informatics Travis Rimel Director New Media, LiveSTRONG Tiffany Peterson Patient Advocate
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26 Principles for Participatory Medicine As a PROVIDER of healthcare: 1. Health Data in the Hands of Patients & their Caregivers. 2. Get Feedback from Patients. 3. Resources in the Hands of Patients. 4. Encourage Participatory Patients. As a RECIEVER of healthcare: 1. Use the Health Data my Clinician Offers. 2. Give Feedback. 3. Between Visits, Use the Resources My Providers Give Me & the Resources I Find. 4. Encourage my Clinicians to be Participatory Providers.
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30 For more information visit: Seal.ParticipatoryMedicine.org
31 Health Data Forum III June 5-6, 2012 Alliance for Nursing Informatics (ANI) A unified voice for nursing informatics!
32 Member Organizations AMIA ANIA-CARING Association of perioperative Registered Nurses (AORN) Association of Women s Health, Obstetric and Neonatal Nurses (AWHONN) Center for Nursing Classification and Clinical Effectiveness (CNC) Central Savannah River Area Clinical Informatics Network (CSRA - CIN) Cerner Nursing Advisory Board Connecticut Healthcare Informatics Network (CHIN) CPM Resource Center International Consortium Croatia Nursing Informatics Association (CroNIA) Delaware Valley Nursing Computer Network (DVNCN) Health Informatics of New Jersey (HINJ) HIMSS Informatics Nurses From Ohio (INFO) MEDITECH Nurse Informatics program Midwest Nursing Research Society - NI Research Section (MNRS) Minnesota Nursing Informatics Group (MINING) NANDA International National Association of School Nurses (NASN) New England Nursing Informatics Consortium (NENIC) North Carolina State Nurses Association Council on NI (NCNA CONI) The Omaha System Puget Sound Nursing Informatics (PSNI) SNOMED CT Nursing Working Group South Carolina Informatics Nursing Network (SCINN) Surgical Informations Systems Taiwan Nursing Informatics Association (TNIA) Utah Nursing Informatics Network (UNIN) Proudly Affiliated with the American Nurses Association
33 ANI joins ONC Consumer ehealth Pledge Nurses are the most-trusted health professionals and have a long history of patient advocacy. 3.1 Million Nurses Empowered to use ehealth Touching 18 Million Patients/Yr Our Pledge
34 Campaign launch February 21,
35 Our Plan # Individual Nurse taking our Pledge # of organizations driving traffic to our Pledge ANI organizations hosting events Stories about Nurses personal and family experiences Stories about Nurses encouraging patients/families
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37 Giving the Patient a Voice
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50 HDIFORUM.ORG #HEALTHDATA ATTITUDES: Fanning the Flames of Consumer Demand Moderator Judy Murphy Deputy National Coordinator of Policy and Programs, ONC Alan Greene Society for Participatory Medicine Ellen Makar Director, Nursing and Clinical Transformation, Yale New Haven Hospital, Alliance for Nursing Informatics Travis Rimel Director New Media, LiveSTRONG Tiffany Peterson Patient Advocate
51 HDIFORUM.ORG #HEALTHDATA HealthIT.gov/pledge
Alliance for Nursing Informatics Position to the ONC Federal Information Technology Strategic Plan 2011-2015
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