Crowds Care for Cancer: Supporting Survivors

Informational Webinar

5.06.13

Office of the National Coordinator for Health Information Technology

1

On Today’s Call:

• Adam Wong, Office of the National Coordinator for Health IT

• Abdul Shaikh, National Cancer Institute

• Carly Parry, National Cancer Institute

• Kasia Galica, National Cancer Institute

• Jean-Luc (“JL”) Neptune, Health 2.0

• Graeme Ossey, Health 2.0

Agenda:

• Challenge Background

• Overview of Challenge Details

• Q&A

ONC and i2 Goals

Office of the National Coordinator for Health Information Technology

2

• Better Health, Better Care, Better Value through Quality Improvement

– Further the mission of the Department of Health and Human Services

– Highlight programs, activities, and issues of concern

• Spur Innovation and Highlight Excellence

– Motivate, inspire, and lead

• Community building – Development of ecosystem

• Stimulate private sector investment

NCI: Established by congress in 1937, is the leading Federal agency and world’s largest organization solely dedicated to cancer-related research, training, and dissemination of information. DCCPS: aims to reduce the risk, incidence, and deaths from cancer as well as enhance the quality of life for cancer survivors. The Division conducts and supports an integrated program of the highest quality behavioral, epidemiologic, genetic, health services, and surveillance cancer research.

“Much of the suffering and death from cancer could be prevented by more systematic efforts to reduce tobacco use, improve diet and physical activity, reduce obesity, and expand the use of established screening tests. The American Cancer Society estimates that in 2011 about 171,600 cancer deaths will be caused by tobacco use alone. In addition, approximately one-third of the 571,950 cancer deaths expected to occur in 2011 are attributed to poor nutrition, physical inactivity, overweight, and obesity.”1

1. American Cancer Society. Cancer Prevention & Early Detection Facts & Figures 2011.

Atlanta: American Cancer Society; 2011.

Source: Brad Hesse, NCI

NCI Priorities in Behavioral Informatics 1. How do we encourage evidence-based innovation

within the next generation of health IT applications?

2. How do we use communication science to support Health IT “meaningful use” goals? (Improve outcomes, patient

engagement, care coordination, population health, protect privacy)

3. How do we improve communication processes relevant to the six functions of patient-centered communication? (Exchanging information, fostering healing relationships, managing uncertainty, responding to emotions, decision-making, and enabling patient self-management)

* Hesse, B., et al. (in preparation). Consumer Demand Outstrips Health System Supply: Trends in the American Public’s Use of, Beliefs about, and Attitudes toward Information Technology in Healthcare.

• 92 percent of American adults believe it to be “very or somewhat important” for their health care providers to be able to share information with other providers electronically.*

(63% = Very Important + 29% = Somewhat Important)

• 90 percent believe it to be “very or somewhat” important that they should be able to get their own medical information electronically.* (Very Important = 69%; Somewhat Important = 21%)

• Convened an expert roundtable to begin articulating a research agenda (June 7, 2012)

• The opportunity to empower an engaged population; • Data interpretation and decision support; • Balancing the needs of individuals and populations; • The influence of culture, incentives and regulation; • Examining the future and the present in parallel

Health IT for Patient-Centered Care

6

Communication & Behavior Across The Cancer Control Continuum

.

7

Multi-level peer support,

consumers/clinicians, information, monitoring

Decision support, care coordination, collaboration

Follow-up and decision support, care coordination, patient

engagement

Compliance, care coordination, collaboration,

reminder systems

Transition to 1o, surveillance, health

promotion, end-of-life

PREVENTION • Tobacco Control • Diet • Physical activity • Sun exposure • Virus exposure • Alcohol use • Chemoprevention

DETECTION • Pap test • Mammography • FOBT • Sigmoidoscopy • PSA

DIAGNOSIS • Informed

decision-making

TREATMENT • Health services and

outcomes research

SURVIVORSHIP • Coping • Health promotion

for survivors

• Nearly 14 million US cancer survivors--& growing

• At risk for increased physiologic and psychosocial morbidity due to late and long-term effects of cancer and its treatment

• Growing concern about how to best deliver follow-up care to address cancer survivors’ complex, ongoing needs

• IOM report, Lost in Transition, recommended use of a treatment summary and survivorship care plan, with consultative visit

Survivorship Care Planning: Background

•Accreditation bodies have called for implementation of care planning

• Lack of evidence base re:

– the efficacy of care plans

– how best to implement care plans

– the best constructs and measures for evaluating SCPs

Where Are We?

NCI has released two program announcements:

Focus: to stimulate research evaluating the effects of care planning on survivors’

physical and psychosocial health outcomes; self-management of late effects and adherence to screening and health behavior guidelines; utilization of follow-up care; organizational factors; and associated costs.

“Examination of Survivorship Care Planning Efficacy & Impact”

• R21 (PA-12-274) – http://grants.nih.gov/grants/guide/pa-files/PA-12-274.html

• R01 (PA-12-275) – http://grants.nih.gov/grants/guide/pa-files/PA-12-275.html

IOM-Recommended Elements of the Survivorship Care Plan

•Treatment Summary

– Cancer characteristics, treatment history

– Potential complications

•Care Plan

– Recommendations for surveillance, prevention, health maintenance

– Information about management of symptoms, psychosocial sequelae, community resources

– Detailed plan for follow-up care

Why We Need Innovation

To understand:

–How best to use technology to develop and implement survivorship care plans and care planning interventions?

–Care plans as living documents

–Meaningful, patient-centered use of care plans

12

The Challenge

Office of the National Coordinator for Health Information Technology

13

The Challenge is a call for developers, researchers, and other innovators to create new information management tools and applications that help cancer survivors manage their health and healthcare after completing cancer treatment.

Phase I Requirements:

• Wireframes of Proposed App

• PDF presentation explaining the app – 7 slides max

Phase II Requirements:

• Post relevant details of app to MedStartr

• Submit functioning application

Crowdfunding

Office of the National Coordinator for Health Information Technology

14

• Crowdfunding describes the collective effort of individuals who network and pool their resources, usually via the Internet, to support efforts initiated by other people or organizations.

Reference: http://tech.co/crowdfund-act-2012-03

Phase II Crowdfunding

Office of the National Coordinator for Health Information Technology

15

Phase II:

• Building a crowdfunding campaign posted on MedStartr – Finalists will prepare campaigns with guidance and optimization

assistance for promotion on the portal

– MedStartr will support finalists in their use of social marketing strategies for outreach to personal networks, target audiences, and general public

References: http://www.socialsearchmobile.org & http://socialmediasorted.com/wp-content/uploads/social-media.jpg

Crowdfunding

Office of the National Coordinator for Health Information Technology

16

Goals and Benefits of Crowdfunding:

• Early stage consumer support and feedback benefits may advise future iterations

• Engagement with target audiences may offer market validation

• Potential to uncover additional relevant audiences

• Additional support for long-term innovation

Review Criteria • The submission is an innovative information management tool or

application deployable on any personal computing platform widely available to consumers;

• Addresses the needs of cancer survivors managing their transition from specialty to primary care;

• Customizability and ability to adapt to evolving survivorship care needs including primary/specialist care interactions.

• Usability and design; • Evidence of co-design with, and support from users of proposed

tool or application (e.g., patients, families, primary/specialty caregivers, insurers, and/or hospital systems);

• Innovation/differentiation from existing technologies and products; and,

• Functionality, accuracy, integration with electronic care platforms, and use of Blue Button+ standards (bluebuttonplus.org) and other sources of health-related information;

Office of the National Coordinator for Health Information Technology

17

Timeline

Phase I

Submission Period: April 30, 2013 to May 28, 2013 11:59 p.m. PDT

Finalists Notified: May 31, 2013

Finalists Announced: Health Datapalooza, June 3, 2013

Phase II

Submission Period: June 10, 2013 to July 12, 2013 11:59 p.m. PDT

Crowdfunding : June 10, 2013 - July 5, 2013

Announce Grand Prize Winner: July-August, 2013

Office of the National Coordinator for Health Information Technology

18

Prizes

Phase I Finalists: $5,000

First Place: $25,000

Not to mention: recognition, publicity, credibility and reach!

Office of the National Coordinator for Health Information Technology

19

Questions?

Office of the National Coordinator for Health Information Technology

20

www.health2challenge.com

Contact Graeme:

graeme@health2con.com