Enabling Healthy Living - Derek Hansen (UMD), Alex Pentland (MIT), Frank Moss (MIT), Gary Marchionini? (UNC)

Our healthcare system is in crisis. Many factors are to blame, but two stand out from the rest: increasing demand and a mindset based on treating disease rather than preventing it in the first place. Chronic ailments have increased dramatically in the last 20 years in our nation, and the percent of the GNP devoted to health care exceeds 16% (as compared to the 8% spent in many other countries). Yet entrenched political interests and a lack of personal ownership of health continue to block change to either the healthcare system or its payment model. What is needed is a radical reformulation of the healthcare system into a health system: a network of organizations and tools that enables people to take ownership of their health and welbeing throughout their lives.

The rudimentary elements of such as health system are beginning to form, but progress is slow and piecemeal. An injection of innovative approaches to empowering patients have emerged under the banner of health 2.0 (http://health2con.com/). Sites such as RevolutionHealth (http://www.revolutionhealth.com/) act as health portals for individuals, helping them to make sense of everything from diseases to health insurance through access to content, phone operators, and communities of peers. Initial forays into the health system by Google (Google Health) and Microsoft (HealthVault) have demonstrated the potential for transformative technologies, as well as some of the inherent challenges. Novel peer communities such as PatientsLikeMe and Inspire enable those with a common disease to not only support one another via conversations, but also through sharing health information. General social network services like Facebook have hundreds of groups organized by characteristics such as disease type, geography, and belief. Meanwhile, the majority of medical practices and insurance companies have been notoriously slow at adopting innovative technologies and social strategies to empower patients. What is becoming clear is that a successful health system will be centered around individuals, families and small groups rather than medical establishments. Those individuals will be encouraged to take ownership for their own health and the health of those around them and will have at their disposal a network of tools and organizations to enable them in this endeavor. Theorists have described this as a move from intermediation, a system where healthcare providers and funders stand as gatekeepers to healthcare services, to apomediation, a system where tools, people and organizations stand "beside" individuals to help them make informed decisions (Eysenbach 2008).

Unfortunately, the US healthcare system and research funding models are strongly entrenched in the exising paradigm. Although some innovative research has begun to explore ways of empowering health living, much of the best government sponsored research in this area is conducted abroad. Compare for example, conference themes and journal articles associated with the American Medical Informatics Association with international conferences such as Medicine 2.0 and rising journals such as the Journal of Medical Internet Research that fill voids left by too strong a connection to existing practices and mindsets. There are notable exceptions including the Health 2.0 movement and initiatives discussed in places such as Patients.Net, but those involved in these efforts often feel marginalized by the existing healthcare system. If the US wants to remain a leader in health innovation, funding agencies and policy makers will reevaluate their priorities and existing relationships. They will put efforts that empower individuals to live healthy lives at the forefront, not backstage. They will see individuals as the primary providers of their own healthcare, not as passive recipients (ePatients White Paper). They will see the health system as centering around the home and individuals via mobile devices, not the hospital and clinic, and they will embrace children, adults, and seniors as lifelong learners and practitioners of healthy behavior.

Scientific Questions
Addressing a number of scientific questions will help to propel this vision of a health system into a reality and assure that it is founded on sustainable principles. Below are a few examples of questions that should be addressed:

  • How can individuals and apomediaries assure that confidential health information is responsibly dealt with?
  • How can peers, medical professionals, and researchers collaborate together effectively to gather, analyze, and interpret health data on people with specific illnesses?
  • How can disparte evidence and beliefs about health be integrated and evaluated?
  • How can smart mobile devices and social media tools be used to encourage health behavior such as weightloss and exercise?
  • How can a payment and incentive infrastructure be developed that will enable healthy competition among those working in the health arena?
  • What physical and psychological ailments can peers provide effective support for, and which do they support poorly?
  • How can health information be aggregated and visualized in order to recognize trends?
  • How can we develop interfaces that help consumers make more informed decisions and risk assessments?

Computer Science Questions

There are also a number of computer/information science and engineering challenges that must be addressed. Some of them include:
  • How can unobtrusive personal sensing devices that monitor various aspects of our health be developed and implemented?
  • How can smart devices be embedded in our clothing, [bodies?] homes, workplaces, and neighborhoods to monitor health threats?
  • How can protocols be established to ensure the privacy of health information, while still benefiting from its exchange?
  • How can large datasets of health information be mined for consistent patterns?
  • How can personal health information be integrated with institutional medical record information?
  • How can personal health information be preserved over a lifetime and multiple generations?

Next Steps
The time is right for concerted action to leverage the social-political energy that has arisen to change our thinking about health and to leverage the technical developments that enable scalable human participation and communication. Some specific next steps include:
  • NSF, NIH, and other government agencies can initiate research initiatives that bring interdisciplinary teams together to address the general and CS questions above.
  • Political, academic, and industry leaders can advocate for human-centered research and development that engages the broadest participation from all elements of society.
  • Individuals can use social network technologies to form groups to bring peer-to-peer support to those in need; share information with others with common interests; and advocate for heath education, accurate and freely available health information, and emphasis on heath as well as disease.
  • Researchers can give additional attention to working with the public to understand needs and desiderata.

Eysenbach G. Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008;10(3):e22 URL: http://www.jmir.org/2008/3/e22/ doi:10.2196/jmir.1030

ePatients White Paper: http://www.acor.org/epatientswiki/index.php/Main_Page