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

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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

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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)

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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

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American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2016-

2017. Atlanta: American Cancer Society; 2016

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American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2016-

2017. Atlanta: American Cancer Society; 2016

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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

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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.

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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

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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

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How do Cancer Survivors perceive and

use Health Information Technology?

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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.

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Cancer Survivors’ Use and Expectations of Health

Information Technology: A Qualitative Study (Cont.)

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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

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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

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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

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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]”

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• 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

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The Quantified Self Self-Knowledge Through Numbers

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The Internet of Things (IoT)

From Wilgengenbroed on Flickr –

https://www.flickr.com/photos/wilgengebroed/8249565455/

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www.itu.int/internetofthings/

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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

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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

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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.

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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

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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.

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