Amulet: an open-source wrist-worn platform for mHealth research and education

The advent of mobile and wearable computing technology has opened up tremendous opportunities for health and wellness applications. It is increasingly possible for individuals to wear devices that can sense their physiology or health-related behaviors, collecting valuable data in support of diagnosis, treatment, public health, or other applications. From a researcher’s point of view, the commercial availability of these “mHealth” devices has made it feasible to conduct scientific studies of health conditions and to explore health-related interventions. It remains difficult, however, to conduct systems work or other experimental research involving the hardware, software, security, and networking aspects of mobile and wearable technology. In this paper we describe the Amulet platform, an open-hardware, open-software wrist-worn computing device designed specifically for mHealth applications. Our position is that the Amulet is an inexpensive platform for research and education, and we encourage the mHealth community to explore its potential.

The full article can be downloaded below.  

Next‐generation sequencing in precision oncology: Patient understanding and expectations

Implementation of precision oncology interventions poses several challenges to informed consent and patient education. This study assessed cancer patients’ understanding, expectations, and outcomes regarding participation in research examining the impact of matched tumor and germline sequencing on their clinical care.

A total of 297 patients (mean age: 59 years; 50% female; 96% white) with refractory, metastatic cancer were surveyed, including 217 who completed surveys both before and after undergoing integrated whole exome and transcriptome sequencing as part of a larger clinical research study.

At baseline, the vast majority of patients expected to receive several potential direct benefits from study participation, including written reports of sequencing findings (88%), greater understanding of the causes of their cancer (74%), and participation in clinical trials for which sequencing results would make them eligible (84%). In most cases, these benefits were not realized by study completion. Despite explanations from study personnel to the contrary, most participants (67%‐76%) presumed that incidental germline sequencing findings relevant to noncancerous health conditions (eg, diabetes) would automatically be disclosed to them. Patients reported low levels of concern about study risks at baseline and low levels of regret about study participation at follow‐up.

Findings suggest that cancer patients participating in precision oncology intervention research have largely unfulfilled expectations of direct benefits related to their study participation. Increased focus on patient education to supplement the informed consent process may help manage patients’ expectations regarding the extent and likelihood of benefits received as a result of undergoing genomic sequencing.

The full article can be downloaded below.  

Feasibility of Reidentifying Individuals in Large National Physical Activity Data Sets From Which Protected Health Information Has Been Removed With Use of Machine Learning

Using large national physical activity data sets, we found that machine learning successfully reidentified the physical activity data of most children and adults when using 20-minute data with several pieces of demographic information. Partial aggregation of the data over time (eg, reidentifying daily-level physical activity data) did not significantly reduce the accuracy of the reidentification. These results suggest that current practices for deidentification of Physical Activity Monitor (PAM) data might be insufficient to ensure privacy and that there is a need for deidentification that aggregates the physical activity data of multiple individuals to ensure privacy for single individuals.

The full article can be downloaded below.  

Precision Medicine: An Action Plan for California

This report attempts to describe the changing landscape of the healthcare world we know, how we would like the landscape to evolve with precision medicine, and some initial steps California and its partners can collectively take to reach our goal of precision medicine for all, sustainably and responsibly delivered. The report is organized into seven chapters, each of which includes a set of recommendations (which are also listed collectively following the executive summary).

The full document can be downloaded below.  

Choosing Wisely campaigns globally: A shared approach to tackling the problem of overuse in healthcare

Choosing Wisely, a campaign which launched in the United States in 2012, has now spread to over 20 countries around the world. Choosing Wisely campaigns share a core set of principles, which inform how campaigns operate and engage with physicians, clinicians, patients, and other stakeholders. This article will address the origins and motivation of Choosing Wisely campaigns, and what factors have supported their spread. It will also discuss how leaders of Choosing Wisely campaigns are collaborating on shared priorities.

The full article can be downloaded below.

Consumer perceptions of health IT utilization and benefits

The objective of this article is to examine consumer perceptions of health information technology (health IT) utilization and benefits through an integrated conceptual framework.

This article employs an integrated conceptual framework to examine consumer perceptions of health IT. A consumer survey yielded 1125 completed responses. A factor-based scale was developed for each sub-construct. Bivariate analysis using v2 tests was performed to determine differences in the percentage of respondents who agreed with each sub-construct based on whether their physician used an electronic health record (EHR) system. Multivariable logistic regression that controlled for demographic characteristics of respondents was performed to determine adjusted odds of agreeing with selected opinions of health information exchange (HIE).

Results indicate that respondents whose physicians used an EHR system were significantly more likely to agree that there was a perceived benefit with HIE and to care provided; that the patient should have control over the record; that they trust the physician and security of the medical information; that they understand the need for HIE, and that HIE must be easy to use.

The results suggest that consumers who have experienced the use of one technology in the healthcare setting can recognize the potential benefit of another technology. Race/ethnicity, gender, and education played some role in respondents’ views of EHRs and HIE, more specifically, non-Hispanic African American participants indicated lower levels of trust in HIE when compared with non-Hispanic Whites.

This cross-sectional survey indicated that physician use of EHRs significantly increases the odds of consumers’ seeing perceived benefits of HIE and understanding the need for HIE.

The full article can be downloaded below.  

5 blockchain developments in 2018

Blockchain moved from mostly hype in 2017 to early technological developments, proofs-of-concept and pilot projects during the last 12 months.  

Deloitte, in a late summer report, predicted a breakout moment for the distributed ledger technology is approaching as almost 75 percent of research respondents see a compelling business case for DLT.  

So it’s no surprise that major tech vendors are embracing Blockchain. Here are five such moves made in 2018.

1. Walmart filed a blockchain patent
2. Change Healthcare made enterprise blockchain technology available
3. Amazon made a blockchain move of its own
4. The CDC enlisted IBM and Intel in blockchain pilots to fight the opioid epidemic
5. Gartner cautioned against waiting too long to get started

The full Healthcare IT News article can be viewed at this link.  

The value of learning health systems in disease control and aging

We are living in an unprecedented revolutionary age of science and technology. Real‐time databases of disease‐specific registries are expected to dramatically and efficiently accelerate clinical research studies. The use of real‐world data to augment data from randomized clinical trials is gaining traction and support globally. The article entitled “The Global Academic Research Organization Network: Data Sharing to Cure Diseases and Enable Learning Health Systems” in this issue describes the activities of the Global ARO Network, including a workshop with participants from Asia, Europe, and the United States. This network represents the global expansion of the ARO Council and global disease‐specific consortia that collaborate on disease‐specific registries. Such networks enable research on a global scale to test drugs and medical devices from academia, ushering in an age where we can collaborate on research and obtain approval for new therapies simultaneously around the world. The formation of global networks for patients with rare diseases is an essential step toward overcoming such diseases, and we now have a more specific picture of the expanded role that these networks play in realizing global learning health systems.

Not only can learning health systems be beneficial in identifying the best treatments for individuals with specific diseases, but there is a role for functioning learning health systems to be more broadly applied to identifying ways to prevent diseases by leveraging and learning from the data from healthy individuals. In developed countries, aging populations pose an increasing social burden and a threat to the vitality of the society, particularly when many of the elderly are inflicted with chronic or debilitating diseases. The slogan, “society in which people in their 100s can remain active,” presages a society where no one is bedridden.* This idea may seem like an impossible dream, like eternal youth and immortality. However, there is an important role of learning health systems in resolving the age‐associated dilemma of extending life, along with quality of life, and controlling diseases that prevent most elderly individuals from being independent and active centenarians.

The full article can be downloaded below.  

Seven years of telemedicine in Médecins Sans Frontières demonstrate that offering direct specialist expertise in the frontline brings clinical and educational value

Médecins Sans Frontières (MSF), a medical humanitarian organization, began using store-and-forward telemedicine in 2010. The aim of the present study was to describe the experience of developing a telemedicine service in low-resource settings.

We studied the MSF telemedicine service during the period from 1st July 2010 until 30th June 2017. There were three consecutive phases in the development of the service, which we compared. We also examined the results of a quality assurance program which began in 2013.

During the study period, a total of 5646 telemedicine cases were submitted. The workload increased steadily, and the median referral rate rose from 2 to 18 cases per week. The number of hospitals submitting cases and the number of cases per hospital also increased, as did the case complexity. Despite the increased workload, the allocation time reduced from 0.9 to 0.2 hours, and the median time to answer a case decreased from 20 to 5 hours. The quality assurance scores were stable. User feedback was generally positive and more than 90% of referrers who provided a progress report about their case stated that it had been sent to an appropriate specialist, that the response was sufficiently quick and that the teleconsultation provided an educational benefit. Referrers noted a positive impact of the system on patient outcome in 39% of cases.

The quality of the telemedicine service was maintained despite rising caseloads. The study showed that offering direct specialist expertise in low-resource settings improved the management of patients and provided additional educational value to the field physicians, thus bringing further benefits to other patients.

The full article can be downloaded below.  

Evaluating the Needs of Cancer Survivors through Focus Groups and Surveillance Data

Public health has typically emphasized prevention and early detection, while the medical community has focused on treatment. Therefore, the ongoing needs of post-treatment cancer survivors are often overlooked. It has become essential for states and researchers to examine the public health needs of this growing population to promote their quality of life. In Michigan, data from the Michigan Cancer Surveillance Program (MCSP) and the 2015 Michigan Behavioral Risk Factor Survey (MiBRFS) in conjunction with cancer survivor focus groups were used to assist public health professionals understand the mental and physical health issues within this population.

The full article can be downloaded below.