Driving the precision medicine highway: community health workers and patient navigators

The general public is currently bombarded with direct-to-consumer advertising, real time “medical” guidance through the internet, access to digital devices that capture health information, and science-based adds that promote foods, cosmetics, and dietary supplements. Unfortunately, much of this information relies on terminology and concepts not well-understood by consumers, particularly those with lower levels of health and genomic literacy. Such constraints align with the limitations of the American public to obtain and process the basic medical information needed to make appropriate healthcare decisions. Low levels of health and genomic literacy render the American public ill-equipped to make informed decisions, use and interpret genomic information, or appreciate the benefits afforded by genomics-based technologies. We propose that coordinated expansion of the roles of community health workers and patient navigators within the precision medicine space can be effectively used to disseminate the knowledge required for the public to benefit from precision medicine advances in healthcare. A well-organized and trained community health worker and patient navigator workforce will provide a voice for the disadvantaged, especially among recent immigrants likely to be experiencing social isolation, language barriers, and economic deprivation. Armed with this knowledge, community health workers and patient navigators can advance the precision medicine agenda and empower disadvantaged communities to take advantage of major advances in the precision medicine era.

The full article can be downloaded below.  

Personalizing solidarity? The role of self-tracking in health insurance pricing

Can data-driven innovations, working across an internet of connected things, personalize health insurance prices? The emergence of self-tracking technologies and their adoption and promotion in health insurance products has been characterized as a threat to solidaristic models of healthcare provision. If individual behaviour rather than group membership were to become the basis of risk assessment, the social, economic and political consequences would be far-reaching. It would disrupt the distributive, solidaristic character that is expressed within all health insurance schemes, even in those nominally designated as private or commercial. Personalized risk pricing is at odds with the infrastructures that presently define, regulate and deliver health insurance. Self-tracking can be readily imagined as an element in an ongoing bio-political redistribution of the burden of responsibility from the state to citizens but it is not clear that such a scenario could be delivered within existing individual private health insurance operational and regulatory infrastructures. In what can be gleaned from publicly available sources discussing pricing experience in the individual markets established by the Patient Protection and AffordableCare Act 2010 (ACA), widely known as‘Obamacare’, it appears unlikely that it can provide the means to personalize price. Using the case of Oscar Health, a technology driven start-up trading in the ACA marketplaces, I explore the concepts, politics and infrastructures at work in health insurance markets.

The full article can be downloaded below.  

The Missing Diversity in Human Genetic Studies

The majority of studies of genetic association with disease have been performed in Europeans. This European bias has important implications for risk prediction of diseases across global populations. In this commentary, we justify the need to study more diverse populations using both empirical examples and theoretical reasoning.

The full article can be downloaded below.  

Mobilizing mHealth Data Collection in Older Adults: Challenges and Opportunities

Worldwide, there is an unprecedented and ongoing expansion of both the proportion of older adults in society and innovations in digital technology. This rapidly increasing number of older adults is placing unprecedented demands on health care systems, warranting the development of new solutions. Although advancements in smart devices and wearables present novel methods for monitoring and improving the health of aging populations, older adults are currently the least likely age group to engage with such technologies. In this commentary, we critically examine the potential for technology-driven data collection and analysis mechanisms to improve our capacity to research, understand, and address the implications of an aging population. Alongside unprecedented opportunities to harness these technologies, there are equally unprecedented challenges. Notably, older adults may experience the first-level digital divide, that is, lack of access to technologies, and/or the second-level digital divide, that is, lack of use/skill, alongside issues with data input and analysis. To harness the benefits of these innovative approaches, we must first engage older adults in a meaningful manner and adjust the framework of smart devices to accommodate the unique physiological and psychological characteristics of the aging populace. Through an informed approach to the development of technologies with older adults, the field can leverage innovation to increase the quality and quantity of life for the expanding population of older adults.

The full article can be downloaded below.  

Machines Treating Patients? It's Already Happening

Looking back, many experts agree that the spotty record of early applications of AI don’t necessarily signal the demise of machine learning in medicine. Instead, they highlight the need to be humble with any innovation, especially one that comes with too much hype. “IBM was too ambitious in my opinion,” says Dr. Steve Jiang, director of the medical AI and automation lab at UT Southwestern.

Today’s efforts in AI are somewhat less flashy, though still potentially revolutionary, and all seem to recognize one vital lesson: treating patients is both art and science. Rather than attempting to replace the physicians in medical practice, AI can, and should, say more experts, become a valuable tool in enhancing what doctors do.

The full Time article can be viewed at this link.  

4 mistakes your patients should avoid with wearables

Evidence on the impact of wearable digital health-monitoring devices is still emerging, as clinicians and researchers work to find out what these gadgets can and cannot do. In the meantime, however, there is a growing idea about the potential medical missteps patients should be aware of when donning wearables. 

1. Disengaging before the benefit can be realized
2. Ignoring the body’s messages and relying solely on the device
3. Getting fixated on the data, a recipe for high anxiety
4. Interpreting the data without physician help

The full American Medical Association article can be viewed at this link.  

Adversarial attacks on medical machine learning

With public and academic attention increasingly focused on the new role of machine learning in the health information economy, an unusual and no-longer-esoteric category of vulnerabilities in machine-learning systems could prove important. These vulnerabilities allow a small, carefully designed change in how inputs are presented to a system to completely alter its output, causing it to confidently arrive at manifestly wrong conclusions. These advanced techniques to subvert otherwise-reliable machine-learning systems—so-called adversarial attacks—have, to date, been of interest primarily to computer science researchers. However, the landscape of often-competing interests within health care, and billions of dollars at stake in systems’ outputs, implies considerable problems. We outline motivations that various players in the health care system may have to use adversarial attacks and begin a discussion of what to do about them. Far from discouraging continued innovation with medical machine learning, we call for active engagement of medical, technical, legal, and ethical experts in pursuit of efficient, broadly available, and effective health care that machine learning will enable. 

The full article can be downloaded below.  

Data sharing practices of medicines related apps and the mobile ecosystem: traffic, content, and network analysis

Developers of mobile applications (apps) routinely, and legally, share user data. Most health apps fail to provide privacy assurances or transparency around data sharing practices. User data collected from apps providing medicines information or support may be particularly attractive to cybercriminals or commercial data brokers.

Medicines related apps, which collect sensitive and personal health data, share user data within the mobile ecosystem in much the same way as other types of apps. A small number of companies have the potential to aggregate and perhaps reidentify user data owing to their network position.

The full article can be downloaded below.  

Death by a Thousand Clicks: Where Electronic Health Records Went Wrong

The U.S. government claimed that turning American medical charts into electronic records would make health care better, safer, and cheaper. Ten years and $36 billion later, the system is an unholy mess: Inside a digital revolution gone wrong. A joint investigation by Fortune and Kaiser Health News.

The full Fortune article can be read at this link.  

When Going Digital Makes Health Care Harder

When Jeff Johnson, 66, went online to sign up for Medicare, the trickiness of the process left him frustrated and a little embarrassed.

“Even for me, a lifelong computer geek, there was a complexity that I did not understand. I had to call a friend for help,” he admitted.

If anyone should be able to sail through a digital portal, you’d think it would be Johnson. A computer science professor the University of San Francisco, he’s president of a product usability consulting firm and co-author of Designing User Interfaces for an Aging Population, published to make the case for improving access for older users of technology.

Johnson’s brief struggle underscores the fact that many medical providers, health care organizations and insurers have work to do to make their digital services more user-friendly.

The full Forbes article can be viewed at this link.