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Bradford W. Hesse, PhDChief, Health Communication and Informatics Research Branch
Improving Cancer-Related Outcomes with Connected HealthImplications from the 2016 President's
Cancer Panel Report
Jessie Gruman, Pres. CFAH
In MemoriamDecember 7, 1953
- July 14, 2014
“The millions of dollars of biomedical research … aimed at a disease that was costing 10’s of thousands of dollars to treat and it ultimately relied on the actions of a skinny, weak, scared 20-year old to have its impact.”
Jessie Gruman
“Those of us with multiple chronic conditions may consult many physicians in the course of a year. Last year, I saw 11. Not one of my doctors has ever communicated directly with another… I am the sole arbiter of who gets what information in what format and when.”
Jessie Gruman
NoMa&erWhere:TheMovie Dr. Kevin B. Johnson
Filmmaker
Disconnections in Cancer Care
*Source: Jemal, A., Siegel, R., Xu, J., & Ward, E. Cancer statistics, 2010. CA Cancer J Clin, 60(5), 277-300.
John Seffrin, CEO American Cancer Society
“We know what kinds of things need to be done to increase the number of people who
survive from 350 per day to1,000.”Lives saved (annually): 1975 to 2005
TheEpidemicofCommunicationErrorsBlockingOptimalOutcomes
❑ Totalnumberofpreventablemedicalerrorsfromallsourcesexceeds17millioneachyear
❑ JointCommission’sSentinelDatabasereports70%ofallreportedeventshadcommunicationasrootcause
http://www.jointcommission.org/assets/1/18/Root_Causes_by_Event_Type_2004-2014.pdf
Source: Zapka JG, Puleo E, Taplin SH, Goins KV, Yood MU, Mouchawar J, et al. Processes of care in cervical and breast cancer screening and follow-up--the importance of communication. Prev Med. 2004;39:81–90. [PubMed]
CommunicationBreakdownsinCare
ReforgingtheLinks:Assessment
AlexKristVirginiaCommonwealth
Grant#CA168795
MichaelFiore,UWisconsinCA197573
ReforgingtheLinks:Prevention
“Within 90 days of identifying a care gap … 6X pap screens completed, … 6X mammograms completed, … 10 X CRC screening completed”
-Testimony to President’s Cancer Panel, 2014
Nirav ShahVP & COO,
Kaiser So Cal
DashboardsFocused Comms
EHR Tracking
ReforgingtheLinks:Screening
Robin Vanderpool DrPH, CHESUniversity of Kentucky
ReforgingtheLinks:Adaptation
ReforgingtheLinks:Dx&TreatmentTransforming the Patient Encounter: Source Kaiser Internal Data
• Synchronous & Asynchronous Comms
• Point of Need Care• Connected Support
ReforgingtheLinks:Survivorship
Survivorship Care Planning, Tracking, & Vigilance
“Long Data” over Life Span
EllenBeckjord,UPMC
BenShneiderman,UMD
ReforgingtheLinks:AdvancedCancer
LoriDuBenske,UWis.
Channels of Communication
DavidGustafson,UWis.
“High Touch” for patients, families supported through High Tech”
Rise of the “Connected Patient”
“Almost half of the Internet users in 1997 reported looking for health information”
-- Rice & Katz
Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.
Search Term % Using TermDepression 19%Allergies/sinus 16%Cancer 15%Bipolar disorder 14%Arthritis/rheumatism 10%High blood pressure 10%Migraine 9%Anxiety disorder 9%Heart disease Sleep disorders
8% 8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.
Search Term % Using TermDepression 19%Allergies/sinus 16%Cancer 15%Bipolar disorder 14%Arthritis/rheumatism 10%High blood pressure 10%Migraine 9%Anxiety disorder 9%Heart disease Sleep disorders
8% 8%
Terms Searched
Source: Rice RE, Katz JE. The Internet and health communication : experiences and expectations. Thousand Oaks, Calif.: Sage Publications; 2001.
AnExtraordinaryOpportunity
WherewouldyouprefertogoforcancerinformaSon?
Source: Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.
WheredidyougoforcancerinformaSon?
Source: Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med. Dec 12-26 2005;165(22):2618-2624.
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self *45.7% looked for others
2003*
Lila Rutten Mayo Clinic
Rick Moser NCI
Ellen Beckjord U of Pittsburgh Med
DiffusionofonlinehealthinformaSonseeking
See: Rutten LF, Moser RP, Beckjord EB, Hesse, BW, Croyle RT. Cancer Communication: Health Information National Trends Survey. Washington DC: National Cancer Institute. 2007.
*51.6% looked for self *45.7% looked for others
2003*2005*
*58.4% looked for self *59.4% looked for others
Lila Rutten Mayo Clinic
Rick Moser NCI
Ellen Beckjord U of Pittsburgh Med
DiffusionofonlinehealthinformaSonseeking
Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.
HINTSTrends:NewEnglandJournal2010
Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.
HINTSTrends:NewEnglandJournal2010
Source: Hesse BW, Moser RP, Rutten LJ. Surveys of physicians and electronic health information. N Engl J Med. Mar 4 2010;362(9):859-860.
HINTSTrends:NewEnglandJournal2010
HINTSSelectedtoTrackHP2020Goals:HealthIT
Tracking&AdjusSngHP2020Goals:AccesstotheInternet
Source: Hesse BW, Gaysynsky A, Vieux S, et al. Meeting the Healthy People 2020 Goals: Using the Health Information National Trends Survey to Monitor Progress on Health Communication Objectives. Journal of Health Communication. 2014;19(ISS12).
Tracking&AdjusSngHP2020Goals:InteracSngwithHealthSystems
Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology: Promises and Challenges. Nature Reviews; Clinical Oncology (in press).
Tracking&AdjusSngHP2020Goals:Broadband&Mobile
Source: Hesse BW, Greenberg AJ, Rutten LJ. The Role of Internet Resources in Clinical Oncology: Promises and Challenges. Nature Reviews; Clinical Oncology (in press).
MobileApplicaSonsExtendCareto“PointofNeed”
NIH Funding Opportunities:• NOT-OD-13-041: National Science
Foundation - National Institutes of Health NSF-NIH Interagency Initiative: Smart and Connected Health
• PAR-16-292: Mobile Health: Technology and Outcomes in Low and Middle Income Countries (R21)
JournalofNaSonalCancerInsStute:SpecialIssueonChangingCommsLandscape
NIH Funding Opportunities:• Innovative Approaches to Studying Cancer
Communication in the New Media Environment» PAR-16-249 (R01)» PAR-16-248 (R21)
ConsumerEngagement:InternetofThings(IOT)atLocalHomeDepot
TheIOTRevoluSonAppliedtoHealth:PaSentEngagement&Telemedicine
BehavioralSupportfromIOTTechnologies:e.g.,Adherence
June 2015, Office Behavioral and Social Science Research NIH-OD
“WhenIwrote‘TheWorldisFlat’…
Facebookdidn’texist;Twitterwasa
sound;thecloudwasinthesky;4Gwasa
parkingplace;LinkedInwasaprison;
applicationsarewhatyousenttocollege;
andSkype,formostpeople,wasatypo.”- ThomasFriedman,“ThankYouforBeingLate”(2016)
A“Superconvergence”ofMobile,IOT,Cloud,andDataFlows
The President’s Cancer Panel
President’s Cancer Panel
Barbara K. Rimer, DrPH Univ.ofNorthCarolinaatChapelHill
Hill Harper, JDCancerSurvivor,Actor,andBest-SellingAuthor
Owen N. Witte, MDUniversityofCaliforniaLosAngeles
Connected Health
Source: https://prescancerpanel.cancer.gov/
Connected Health
Enable InteroperabilityAction Item 1.1: Interoperable health IT system.Action Item 1.2: Technical standards for cancer.Action Item 1.3: Standard, open API platforms.
Source: Office of the National Coordinator for Health Information Technology (2015). Connecting Health and Care for the Nation: A 10-year Vision to Achieve an Interoperable Health IT Infrastructure. Washington, DC, Department of Health and Human Services,: 13.
Action Item 1.1: Interoperable health IT system.Action Item 1.2: Technical standards for cancer.Action Item 1.3: Standard, open API platforms.
Shore up Standards
Action Item 1.1: Interoperable health IT system.Action Item 1.2: Technical standards for cancer.Action Item 1.3: Standard, open API platforms.
Application Programing Interfaces (API)
Action Item 1.1: Interoperable health IT system.Action Item 1.2: Technical standards for cancer.Action Item 1.3: Standard, open API platforms.
Application Programing Interfaces (API)
Quantified Self
Patient EngagementAction Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Medication Management
Patient EngagementAction Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Patient Portals
Patient EngagementAction Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
The Smart Home
Patient EngagementAction Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Patients as QC Support
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Patients as QC Support
Action Item 2.1: Develop tools for patient engagement.
Action Item 2.2: Patients should flag errors in record.
Action Item 2.3: Better tools for Clinical Trials.
Source: Source: https://www.cancer.gov/syndication/api
Tools for Clinical Trials
Support Clinical WorkforceAction Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.
Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.
Human-Centered Design
Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology workforce.
Human-Centered Design
Interdisciplinary Research• Human Computer Interaction• Organizational Systems• Communication• Design• Cognitive Psychology
Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology needs.
Support Needs in Oncology
Paul Jacobsen, AD
Action Item 3.1: Support for high quality care.
Action Item 3.2: Employ human centered design.
Action Item 3.3: Interfaces for oncology needs.
Support Needs in Oncology
November 2016
Veronica Chollette Sallie WeaverSupports for Team Based Care
Public AccessAction Item 4.1: Bolster public access.
Action Item 4.2: Ensure provider access.
“Connect2HealthFCC is exploring the intersection of broadband, advanced technology and health and further charting the broadband future of health care – serving as an umbrella for all FCC health-oriented activities to help enable a healthier America.”
Provider AccessAction Item 4.1: Bolster public access.
Action Item 4.2: Ensure provider access.
Rural Health Pilot Program
Learning Oncology SystemAction Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.
Enhance SurveillanceAction Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.
Patient Generated Health Data: SEER Rapid Response Special Study
Data IntegrationAction Item 5.1: Learning Oncology Care Systems.
Action Item 5.2: Enhance surveillance.
Action Item 5.3: Data integration.
15 Cancer Centers Funded: National Meetings Open to All
High Priority Research
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