GENEWATCH
 
CONSUMER ENGAGEMENT IN THE GENOMICS ERA
By James O'Leary
 

from GeneWatch 28-1 | Jan-May 2015


Since its inception, people have used the Internet to find what they need and to connect with one another. While healthcare and public health systems have only recently begun to leverage the power of online communication and social media to improve health, advocacy organizations, support groups, and other disease-based affinity groups have dramatically proliferated to fill the gap. Their close ties to individuals and families create effective feedback loops and allow them to iteratively improve programs and mobilize large numbers of individuals to enact change. More than that, these groups are engines of innovation in health. They coordinate and offer services, drive international research, educate and engage individuals and families, and advocate for smarter public policy. While public health has successfully aligned with gatekeeper communities in the past, it has largely failed to tap into the considerable power of the engaged healthcare consumer on an individual level.

Public health programs have often been implemented without the high levels of public awareness and consumer engagement seen in successful advocacy or marketing efforts. Because of this, rigorous standards are in place to ensure that interventions are evidence based, of significant utility, and broadly applicable to populations. These services operate in the background, seamlessly improving the nation's health. And yet, the distance between public health and its beneficiaries has had other, more negative effects. Trust of traditional public health activities such as vaccination has eroded in recent years and public health mandates have been challenged in states, especially where they extend to quality improvement and public health research. In addition, the field of public health has seen stagnant or diminishing funding, while the costs of healthcare have ballooned.

As a relatively new field, public health genomics provides an incubator where we can explore new types of collaboration and innovation. Novel partnerships between traditional public health systems, clinical medicine, and advocacy and support organizations are a requirement due to minimal funding and limited public health workforce with genetics expertise. In addition, hallmark programs such as newborn screening emerged with strong partnership from disease advocacy organizations. Yet we have not even begun to scratch the surface of the power of true consumer engagement to transform health.

Dr. Tom Frieden, Director of the Centers for Disease Control and Prevention (CDC), argues that the biggest impacts can be made at the systems level (the base of the 'Health Impact Pyramid'), including socioeconomic factors and changing the context to make individuals' default decisions healthy.[1] Counseling, education, and clinical interventions appear at the top of the pyramid. Given that, one would be wise to ask where the benefit lies in engaging individuals. On a personal scale, people are:

  • Keepers of valuable health information
  • Actors that can impact their own or others' health
  • Spokes or hubs in a complex network of families and communities
  • Voices for policy and cultural change

But it is these attributes in aggregate that present the biggest potential benefits for public health. While there are "low hanging fruit" interventions that can be taken through public policy, the majority of decisions that people make are driven by culture and social interaction. In order to achieve change in these areas, we must simultaneously hold in our minds the idea of population impact and individual engagement. While these concepts are often viewed as contrary to one another, it is increasingly possible to create systems and technology that are both personalized and pervasive in our modern networked age.

Public health genomics provides at least two key opportunities for population impact and individual engagement centered on data collection and use and screening and testing.

Data Collection and Use

The amount of health data produced each year is dramatically increasing and genomics will only heighten that trend. Everyone is familiar with the term 'big data,' but its full potential in healthcare is uncertain. One thing is certain: De-identified or poorly structured data provides limited utility for healthcare and public health interventions, especially in genomics. In addition, useful data tends to live in silos, such as public health registries, electronic health records, medical devices, apps, and search history. What if we empower individuals by allowing them to dynamically control who sees and uses their data? By following a model that is closer to that used by online tools and apps, we could gather data in layers, collecting some broad, representative data as part of public health programs, while asking for permission where the data is more sensitive and thus more useful. As a community, we fear that giving people choices will lead to opt-out, but this very fear undermines our ability to benefit those who contribute their data, and thus to incentivize participation. How do we look more honestly at what we can provide back to individuals for contributing their data without holding useful services hostage? Numerous lawsuits and the destruction of millions of bloodspots previously available for public health research have taught us the dangers of low public engagement. In essence, access to richer data can allow better access to targeted services and support and help us build a stronger public health system. The decisions we make with regard to control and use of genomic sequencing data and associated phenotypic data will determine whether we continue current models or engage individuals in new ways.

Screening and Testing

With shrinking budgets and a growing number of screening tools, we need to access the networked world to scale our impact. While certain conditions may meet the evidence and utility threshold for broad-based screening programs, such as newborn screening, there are thousands of other diseases that have a major impact on health but require a different approach. One example of such an approach is cascade screening. Cascade screening is a targeted method to identify those at high risk for conditions, promoting prevention and early diagnosis. Individuals who are "at risk" for a specific genetic disease are evaluated and, if they test positive, their parents, siblings, and children may be evaluated. This can identify additional relatives who may be evaluated through a 'cascading' effect. Currently in our healthcare and public health system, we have poor mechanisms for reaching family members or helping individuals connect with their family members, yet there are a multitude of social media sites that do just that. Last quarter Facebook passed 1.19 billion active users, and yet the standard practice that most healthcare institutions use to contact family members is a certified letter. We must embrace tools and resources that help connect 'at risk' individuals, link family members through patient portals and electronic health records, and simultaneously create emissaries of public health.

An important strength of public health is the scale of its impact. While clinical interventions can lead to significant positive health outcomes, they are frequently limited in scope and costly to implement. Public health's focuses on infrastructure, policy, and cross-cutting programs are the foundation of our nation's health. How can we engage the public to magnify that impact? How can we harness the innovation and flexibility of affinity and consumer groups as effective partners? We must think outside the box of traditional public health while maintaining its strengths. Public health genomics is a perfect bridge between the sectors of public health, clinical medicine, and the empowered consumer. But, we need to do more than tweet public health facts to make a difference. We must create a fundamental shift in the way we engage if we are to create a new age of health.

James O'Leary, MBA, is Chief Innovation Officer at Genetic Alliance.

 

ENDNOTES

1. Frieden, T. R., A Framework for Public Health Action: The Health Impact Pyramid. Am J Public Health. 2010 April; 100(4): 590-595. PMCID: PMC2836340

 

 
 
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