Consumer Informatics and Digital Health: Solutions for Health and Health Care

ForewordSusanna Fox, Chief Technology Officer, US Department of Healthand Human Services 
Paul Tang, CMIO, Palo Alto Medical Foundation
SECTION I: Domains of Consumer Informatics and Mobile Health 1. Promoting Consumer Engagement in Health and Health Care 

Margo Edmunds, VP for Evidence Generation and Translation, AcademyHealth
The opening chapter will define consumer informatics, describe the history of different branches of the field (e.g., virtual visits/telehealth, mobile health, and the e-patient movement), and provide a framework for evaluating and disseminating evidence about ways to improve the consumer experience and change health behaviors.  
2. Increasing Consumer Engagement Through Social Media, Crowd-sourcing, and BeyondMandi Bishop, Health Plan Analytics Innovation Practice Lead, Dell 
This chapter will review the state of the art and new directions for online tools to engage consumers in health and health care, focusing on social media platforms, consumer-facing web portals, and emerging technologies from the quantified self movement.
3. The Global Connected Health Ecosystem
Jody Ranck, Gigaom Research
This chapter will review the development, state of the art, and new directions for mobile devices in global health. 
4. Bridging the Gaps: New Approaches to Address Population Health 
Ned Calonge, President and CEO, The Colorado Trust 
This chapter will describe innovations in the use of online and mobile technologies to promote community health and health equity with diverse populations.  

SECTION II: A New Environment for Development and Design5. User-Centered Design
Christopher Hass, SVP, Experience Design, Mad*Pow
This chapter will lay out the fundamentals of user experience (UX) and user-centered design for the Web, including accessibility for people with disabilities. Case examples will be provided. 
6. Usability and Utility Testing 
Christopher Hass, SVP, Experience Design, Mad*Pow
Building on Chapter 5, this chapter will provide practical guidance on applying the principles of user-centered design to ensure the quality of consumer-facing products and services. 
7. Motivational Design and Persuasive Technology for Consumer Learning
Dustin Ditommaso, SVP of Behavior Change Design, Mad*Pow 
Motivational design is an approach to online learning that can be used to increase consumer engagement with content. Persuasive technology uses behavioral science to design systems that promote consumer behavior change similar to personal health coaching, and taking into account both health and technology literacy. This chapter will provide practical advice on using these approaches in the development of health content for consumers.
8. New Directions and Techniques for "Big Data": The Promises and Risks 
John Mattison, CMIO and Assistant Medical Director, Kaiser Permanente Southern California (by interview)
As used in this chapter, big data refers to the storage and analysis of sets of data, including health data, that are too large to process using typical software and analytics processes. As a source for discovery and breakthroughs in health care treatment, big data holds promise but it also presents risks and uncertainties about consumer privacy and security. This chapter will separate out the reality and hype and provide a technical reference for the chapters in Section IV on privacy and security.  

SECTION III: Content Development and Consumer-Generated Data9. Addressing Information Overload: Knowledge Management to Improve Person-Centered Care 
Erin Holve, Senior Director, AcademyHealth
With the explosion of consumer-relevant and consumer-generated health data, this chapter will describe ways to help consumers make the best use of information from a wide variety of sources.  
10. Content Strategy: Writing for Health Consumers on the Web 
Carolyn Petersen, Senior Editor, mayoclinic.org
Seven out of ten visits to the Web are part of consumer searches for health information, but the quality, appropriateness, and accessibility of the information varies widely across different sites. This chapter will review evidence on the value of web information in consumer-driven health care and describe best practices for developing consumer-friendly web content. 
11. Visualization for Comprehension, Engagement, and Healthcare Improvement
Suzanne Bakken, Professor of Biomedical Informatics and Alumni Professor, Columbia University School of Nursing 
This chapter will describe innovative methods to provide consumer-friendly content through visual means. It will be based on the author's work with electronic health records and self-reported information from residents of low-income communities in Northern Manhattan, New York City.  
12. Consumer-Generated Data and Health Information Exchange
Paul Fu, Jr., CMIO Harbor-UCLA Medical Center 
As the nation pursues the goal of population health, it is important for personal health information and consumer-generated data to be standardized, structured, and aggregated for health planning purposes by local health agencies. This chapter will address some of the important technical and governance issues involved in integrating individual health data into health information exchanges at the local and regional levels.  
13. Engaging Consumers in Culturally Diverse Communities
Joy Davis, Kaiser Permanente Institute for Health Policy 
This chapter will provide examples of emerging best practices in culturally competent consumer engagement in a variety of clinical and community settings.   
14. Aging in Place
Charlotte Weaver, Board Director, VitalSims, LLC
Many adults prefer to remain in their own homes as they get older. Technology-enabled supports for older adults and their caregivers are becoming increasingly important with the growing number of people managing chronic health conditions through self-care and home-based care. This chapter will review the key technologies, challenges, and opportunities for remotely generated patient data to improve the health of older adults.  
 SECTION IV: POLICY AND REGULATORY ISSUES15. How Standards and Interoperability Support Consumers
Kevin Larsen, Medical Director of Meaningful Use, Office of the National Coordinator for Health IT, HHS
Including consumers in the free flow of health information is a policy priority, but it will require significant changes in culture and infrastructure. This chapter will provide a consumer-friendly primer on how federal requirements for meaningful use of health data are evolving to improve consumer access to personal health information.  16. The Role of HIPAA in Consumer Health Informatics 
Ann Waldo, Wittie Letsche & Waldo LLP and Doug Peddicord, Washington Health Strategies Group
The Privacy Rule that governs health information transactions has not kept pace with consumer technology and the Web, and many providers believe HIPAA restricts data sharing with consumers and patients. This chapter provides a legal perspective on how HIPAA should be rewritten to allow the free flow of health information to consumers.  
17. Building Consumer Trust Through Information Security
Bradley Malin, Health Information Privacy Laboratory, Vanderbilt University, and Fred Trotter, Co-author, Hacking Healthcare (by interview) 
Some consumers, such as those in the quantified self movement, openly share their personal health data, while others want to maintain personal privacy or are concerned about data breaches. This chapter provides some innovative perspectives on privacy technology that enables trust.  
18. Using Consent to Improve Informedness  
John Wilbanks, Director of Consent to Research (CtR) Project at Sage Bionetworks (by interview)
This chapter will address ethical issues in consumer informatics and online content, including quality assurance, privacy, and security concerns; consent and governance; and the important role consumer information plays in shared decision-making. If privacy concerns have slowed the progress of research, new approaches, such as a pool of freely available health and genomic data, could accelerate innovation. This chapter will describe the range of ethical perspectives on data sharing and propose a new approach.
19. Consumer Expectations About Privacy
Shane Harris, Senior Intelligence and National Security Correspondent, The Daily Beast 
Health care systems have lagged behind other industry sectors in developing secure information-sharing strategies. This chapter will describe the information technology infrastructure and implications for consumers to protect their personal information.  

Section V: Conclusions20. Back to the Future: Emerging Technology, Social, and Political Trends Affecting Consumer Informatics 

Margo Edmunds, Chris Hass, and Erin Holve
This final chapter will summarize technology, social, regulatory, and other trends and issues raised in the book, including the role of collaboration and citizen science for health delivery system reform and population health.