David Ahern, PhD National Cancer InstituteJune 17, 2016 . RVARD L Overview •Cancer as a chronic...
Transcript of David Ahern, PhD National Cancer InstituteJune 17, 2016 . RVARD L Overview •Cancer as a chronic...
PLENARY
David Ahern, PhD
National Cancer Institute
Leveraging the Changing Landscape to Improve
Mental Health Care for Survivors
BREAKOUT
David Ahern, PhD
National Cancer Institute
Leveraging the Changing Landscape to Improve
Mental Health Care for Survivors
HARVARDMEDICAL SCHOOL
Advances in Technology to Support
Healthy Aging of Cancer Survivors
David K. Ahern, PhD
Special Advisor, Health Communication and Informatics Research Branch, Behavior Research Program
Health Care Delivery Research Program
Director, Program in Behavioral Informatics and eHealth Department of Psychiatry
Brigham & Women’s Hospital Harvard Medical School
Biennial Cancer Survivorship Research Conference
June 17, 2016
HARVARDMEDICAL SCHOOL
Overview • Cancer as a chronic illness and the
growing population of cancer
survivors as “baby boomers” age
• Rapid evolution and uptake of
disruptive technology movements –
Quantified Self (QS) and Internet of
Things (IoT)
HARVARDMEDICAL SCHOOL
Overview (Cont.) • Potential for advances in technology to
support enhanced patient engagement in
clinical trials and psychosocial functioning
after cancer treatment
• Need for human-centered design and
research with seniors to develop
acceptable technology mediated tools and
resources
HARVARDMEDICAL SCHOOL
American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2016-
2017. Atlanta: American Cancer Society; 2016
HARVARDMEDICAL SCHOOL
American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2016-
2017. Atlanta: American Cancer Society; 2016
HARVARDMEDICAL SCHOOL
Post-Treatment Concerns
Survivors within 5 years of diagnosis
Beckjord, E. B., Reynolds, K. A., van Londen, G. J., Burns, R., Singh, R., Arvey, S. R., . . . Rechis, R. (2013).
Population-Level Trends in Post-Treatment Cancer Survivors' Concerns and Associated Receipt of Care: Results
from the 2006 and 2010 LIVESTRONG Surveys. J Psychosoc Oncol. doi: 10.1080/07347332.2013.874004
HARVARDMEDICAL SCHOOL
Survivorship Trajectory
Stanton, AL, Rowland, JH, Ganz, PA. Life after diagnosis and treatment of cancer in adulthood.
American Psychologist, 2015, Vol. 70, No. 2, 159-174.
HARVARDMEDICAL SCHOOL
Treatment Summaries and Care Plans*
• Treatment summaries and care plans are
information interventions intended to
help fill the gap that forms in the survivor’s
life between the presence of cancer and
the presence of the health care system
after treatment ends.
• May – or may not – be delivered in the
context of survivorship care, which often
includes medical, behavioral, and
psychosocial interventions. * With permission from E. Beckjord
HARVARDMEDICAL SCHOOL
The Role of Technology
• Technology (EHRs) can improve the
process of deriving Treatment
Summaries/Care Plans
– Data liquidity
• Technology (PHRs, consumer-facing
health informatics) can improve the
impact of Treatment Summaries/Care
Plans
– Informatics-enabled “living” Treatment
Summaries/Care Plans
HARVARDMEDICAL SCHOOL
HARVARDMEDICAL SCHOOL
How do Cancer Survivors perceive and
use Health Information Technology?
HARVARDMEDICAL SCHOOL
Cancer Survivors’ Use and Expectations of Health
Information Technology: A Qualitative Study
• Two facilitated focus groups of cancer survivors
recruited from the Hillman Cancer Center at
UPMC in 2014
• Purpose of the focus groups was to understand
how cancer survivors may have used HIT
during their experience with cancer
Beckjord, E, Ahern, DK, van Londen, GJ, Cardy, A, Muse, C, Novich, C, Hesse, BW. Poster Presentation, Society for
Behavioral Medicine Annual Meeting, April, 2015.
HARVARDMEDICAL SCHOOL
Cancer Survivors’ Use and Expectations of Health
Information Technology: A Qualitative Study (Cont.)
HARVARDMEDICAL SCHOOL
Cancer Survivors’ Use and Expectations of Health
Information Technology: A Qualitative Study (Cont.)
• Consistent themes and subthemes that
emerged from the discussions were
identified
• The derived thematic coding structure was
provided to three independent and trained
coders who analyzed the content within
this structure
HARVARDMEDICAL SCHOOL
Cancer Survivors’ Use and Expectations of Health
Information Technology: A Qualitative Study (Cont.)
• Four major themes emerged:
– Information seeking and processing
• Benefits and risks
• Trust and credibility of sources
• Relying on an “other” for information seeking and processing
• Emotional aspects of information seeking and processing
– Information flow
• Care coordination/interoperability/portability
• Patient involvement
• Ways information was shared between themselves and
others affected by cancer
HARVARDMEDICAL SCHOOL
Study: Cancer Survivors Experience
and Expectations of HIT (cont.)
– Technology for patient empowerment and activation
• Control (including emotional control)
• Relying on information when the care team falls short
• Printing out reports
• User experience of technology
• Correcting errors in the record
– Caregiver roles and experience
• Using technology to support the patient
• Specific ways they used technology
• Specific websites, tools, and sources (technological and non-
technological
HARVARDMEDICAL SCHOOL
Study: Cancer Survivors Experience
and Expectations of HIT (key points)
• Cancer survivors responded positive to use of HIT, but
noted challenges
• Cancer survivors expectations may exceed what HIT can
deliver today, e.g., data portability and interoperability
• Important not to forget the critical role of human element
“We talk a lot about technology, but you can’t do that exclusively and cut out the human
element, because there’s a whole separate facet to it that you can’t get through [without human
touch]”
HARVARDMEDICAL SCHOOL
• Essential for optimizing prevention strategies for cancer
recurrence and early detection
• Advanced EHRs with Clinical Decision Support (CDS)
can enable targeted and personalized treatments
• Interoperable EHRs and health information exchange
(HIE) can enable care transitions and support care
coordination
• Personal health records (PHRs) hold the promise of
fostering a more informed and activated patient
population
Relevance of HIT to Cancer
Prevention and Control
HARVARDMEDICAL SCHOOL
The Quantified Self Self-Knowledge Through Numbers
HARVARDMEDICAL SCHOOL
The Internet of Things (IoT)
From Wilgengenbroed on Flickr –
https://www.flickr.com/photos/wilgengebroed/8249565455/
HARVARDMEDICAL SCHOOL
By SRI Consulting Business Intelligence/National Intelligence Council - Apendix F of Disruptive Technologies Global Trends
2025 page 1 Figure 15 (Background: The Internet of Things), Public Domain,
https://commons.wikimedia.org/w/index.php?curid=10501643
HARVARDMEDICAL SCHOOL
Using Health IT to Improve Cancer Outcomes
Brad W. Hesse, Ph.D.
National Cancer Institute
Rockville, MD
Ellen Beckjord, Ph.D. MPH
UPMC Health Plan
Pittsburgh, PA
HARVARDMEDICAL SCHOOL
HARVARDMEDICAL SCHOOL
https://www.healthit.gov/patients-families/health-conditions
Cancer
Information Sites
LiveStrongWeb Site Disclaimers Resources and services for the
cancer patient community
American Cancer SocietyWeb Site
Disclaimers
Information portal from the American
Cancer Society
National Cancer Institute
Information portal from the U.S.
Government-sponsored National
Cancer Institute.
Association of Cancer
ResourcesWeb Site Disclaimers
Collection of online communities
related to specific types of cancer.
Apps LiveStrong Cancer Guide and
Tracker AppWeb Site Disclaimers
iPad app designed to help cancer
patients easily find information
related to their condition as well as
store and track information related to
their care.
Clinical Trials
Ask DoryWeb Site Disclaimers
An interactive web site to help
patients and caregivers find clinical
trials near them related to a given
type of cancer.
My Cancer GenomeWeb Site
Disclaimers
An interactive web site to help
patients and caregivers find clinical
trials related to particular genetic
variant of a cancer type.
HARVARDMEDICAL SCHOOL
Take-away Points
1. It isn’t about the technologies per se
but rather the functions they enable
and support that is important
2. The more ubiquitous, embedded,
routine, and invisible the technology
is the more useful it will be
HARVARDMEDICAL SCHOOL
Take-away Points (Cont.) 3. Technology should be “people-worthy”
and make sense of the experience that
cancer survivors face*
4. Healthy aging for cancer survivors is
attainable with appropriately designed,
evidence-based technology tools and
resources *Panch, T, Goodman, E. Technology, seniors and sense making. AJMC, 2016,
22:7: SP250-SP251.
HARVARDMEDICAL SCHOOL