David Ahern, PhD National Cancer Institute PLENARY. Leveraging the Changing Landscape to Improve Mental Health Care for Survivors

Transcription

1 David Ahern, PhD National Cancer Institute PLENARY Leveraging the Changing Landscape to Improve Mental Health Care for Survivors

2 David Ahern, PhD National Cancer Institute BREAKOUT Leveraging the Changing Landscape to Improve Mental Health Care for Survivors

3 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

4 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)

5 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

6 American Cancer Society. Cancer Treatment & Survivorship Facts & Figures Atlanta: American Cancer Society; 2016 HARVARD

7 American Cancer Society. Cancer Treatment & Survivorship Facts & Figures Atlanta: American Cancer Society; 2016 HARVARD

8 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: /

9 Survivorship Trajectory Stanton, AL, Rowland, JH, Ganz, PA. Life after diagnosis and treatment of cancer in adulthood. American Psychologist, 2015, Vol. 70, No. 2,

10 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

11 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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13 How do Cancer Survivors perceive and use Health Information Technology?

14 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.

15 Cancer Survivors Use and Expectations of Health Information Technology: A Qualitative Study (Cont.)

16 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

17 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

18 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 nontechnological

19 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]

20 Relevance of HIT to Cancer Prevention and Control 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

21 The Quantified Self Self-Knowledge Through Numbers HARVARD

22 The Internet of Things (IoT) HARVARD From Wilgengenbroed on Flickr

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24 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,

25 Using Health IT to Improve Cancer Outcomes HARVARD Brad W. Hesse, Ph.D. National Cancer Institute Rockville, MD Ellen Beckjord, Ph.D. MPH UPMC Health Plan Pittsburgh, PA

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27 Cancer LiveStrongWeb Site Disclaimers HARVARD Resources and services for the cancer patient community Information Sites Apps Clinical Trials American Cancer SocietyWeb Site Disclaimers National Cancer Institute Association of Cancer ResourcesWeb Site Disclaimers LiveStrong Cancer Guide and Tracker AppWeb Site Disclaimers Ask DoryWeb Site Disclaimers My Cancer GenomeWeb Site Disclaimers Information portal from the American Cancer Society Information portal from the U.S. Government-sponsored National Cancer Institute. Collection of online communities related to specific types of cancer. 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. An interactive web site to help patients and caregivers find clinical trials near them related to a given type of cancer. An interactive web site to help patients and caregivers find clinical trials related to particular genetic variant of a cancer type.

28 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

29 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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