Personal Health Record Interoperability

Personal Health Records (PHRs) is a software application that allows patients to review their medical information remotely through a secure domain. There are four forms of PHRs which are; 1) self-contained Electronic Health Record (EHR), 2) self-contained EHR, 3) PHRs integrated care EHR controlled by health provider and partially by the patient/consumer, 4) PHRs integrated care EHR controlled by the patient/consumer. The methodology for this study was a literature review and semi-structure interview with a specialist in health information technology. Electronic databases used included PubMed, Academic Search Premier, EBSCOhost, LexisNexis and Google Scholar. A total of 38 sources were referenced. Currently, most PHRs are not integrated with other systems. Interoperability exists and has continued to grow steadily, but few individuals perceive the potential benefits of a PHR system including cost and quality of care. Regardless, the review has shown increased PHR use as well as MU adoption. Based on previous literature PHRs, although there has been imported accesses for patient portal as well as major saving for health care providers, the success rate of adoption is still low. The information gathered through semi-structure interview identified PHRs lack of interoperability in the nation and interoperability will not be achieved until the implementation of MU stage 3 by 2019. PHR interoperability has been presented to have significant ability to transform the way individuals have been able to access their PHRs and allowed for increased patient autonomy in the US.

The full article can be downloaded below.  

Deriving a practical framework for the evaluation of health apps

The rise of digital health, fuelled by access to smartphones and connectivity to apps, has resulted in a plethora of mobile technology-based innovations. The US Food and Drug Administration (FDA) estimates that in 2018, 1·7 billion people downloaded mobile health apps. With over 325000 to choose from across all health domains and many updating as frequently as every week, finding and keeping up with useful mental health apps is a challenge.

For patients and clinicians, picking the most suitable apps is difficult because of evolving evidence, emerging privacy risks, usability concerns, and the fact that apps constantly update and change. To help guide selection, people typically rely on the use of star rating systems and user reviews in app stores, despite strong evidence that such evaluation methods are misleading. 

The FDA has realised the diminished value of traditional evaluation approaches and the challenge of regulating apps. To solve this problem, the FDA has begun piloting a novel certification programme, PreCert, that shifts the scrutiny from the apps themselves to the developers. Despite this effort, the programme is nascent, with just nine companies partaking. The UK National Health Service has released a second version of its App Library as another solution.

In this void, numerous app evaluation frameworks have emerged. Although some frameworks have been published in peer-reviewed journals, many live in the grey literature. A systematic review examined existing evaluation frameworks for mobile medical apps, identifying 45 unique frameworks. Not surprisingly, the study found gaps in each framework. Given the obvious need for a more comprehensive evaluation framework, a novel approach is necessary.

We have reframed the app evaluation process away from picking the best-rated app and towards making an informed decision on the basis of clinically-relevant criteria. Just as no single best antidepressant or therapy exists, no single best app exists to treat all patients or mental illnesses. Clinical presentation, patient preferences, technology literacy, accessibility, and treatment goals are all important factors that determine the best course of care for any patient. Such factors must be considered when deciding what the most suitable app might be for a patient in any given situation.

The full article can be downloaded below.  

Beyond Mobile Health Apps

In a recent Next Avenue story, we examined the ubiquity of mobile health apps. Now, our focus shifts to a more expansive view about digital health technologies and on how these technologies are not only playing out today, but what their impact will be in the future.

The full Forbes article can be viewed at this link.  

Primary Care Physicians’ Knowledge, Attitudes, and Experience with Personal Genetic Testing

Primary care providers (PCPs) will play an important role in precision medicine. However, their lack of training and knowledge about genetics and genomics may limit their ability to advise patients or interpret or utilize test results. We evaluated PCPs’ awareness of the role of genetics/genomics in health, knowledge about key concepts in genomic medicine, perception/attitudes towards direct-to-consumer (DTC) genetic testing, and their level of confidence/comfort in discussing testing with patients prior to and after undergoing DTC testing through the 23andMe Health+ Ancestry Service. A total of 130 PCPs completed the study. Sixty-three percent were board-certified in family practice, 32% graduated between 1991 and 2000, and 88% had heard of 23andMe prior to the study. Seventy-two percent decided to participate in the study to gain a better understanding about testing. At baseline, 23% of respondents indicated comfort discussing genetics as a risk factor for common diseases, increasing to 59% after undergoing personal genetic testing (PGT) (p < 0.01). In summary, we find that undergoing PGT augments physicians’ confidence, comfort, and interest in DTC testing.

The full article can be downloaded below.  

Why precision medicines for oncology demands precision engagement

Life sciences companies overwhelmed with large volumes of information and data available - both in terms of therapies and patient-reported outcomes - must establish a more efficient, bi-directional communication model with care teams to succeed.

The full Med City News article can be viewed at this link.  

Opinion: How self-tracking biometrics influence patients, medicine and society

As a consequence of digitalisation, data acquisition related to different aspects of our daily life has become widely available. Monitoring of heart condition, mood or air quality is no longer the domain of specialised laboratories or hospitals, it can be done anytime, anywhere and by anybody. Self-knowledge and self-perception through numbers replace subjective narration based on frame of mind or intuition. Quantified-self phenomena not only revolutionise healthcare, but also promise to boost wellbeing. How will life change in a world where everything becomes measurable?

The full article from Mobie Health News can be viewed at this link.  

Continuing Patient Care During Electronic Health Record Downtime

This study documents the extent to which downtime events are disruptive to hospital operations. It further highlights the challenge of quantitatively assessing the implication of downtimes events, due to a lack of otherwise EHR-recorded data. Organizations that seek to improve and evaluate their downtime contingency plans need to find more effective methods to collect data during these times.

The full article can be downloaded below.  

Trends in Individuals’ Access, Viewing and Use of Online Medical Records and Other Technology for Health Needs: 2017-2018 

The access, exchange, and use of electronic health information is essential for individuals to better manage their health care needs and share information with their providers and caregivers. Many hospitals and physicians possess capabilities that enable patients to view and download their health information. However, additional steps are needed to make health information more accessible and useful to individuals. A majority of individuals have smartphones and use applications (apps) to help them manage various tasks. The 21st Century Cures Act emphasizes the importance of making patient health information more easily accessible and the need for greater education regarding patients’ rights to access their health information. This data brief uses the Health Information Trends Survey (HINTS), a nationally representative survey, to assess individuals’ access, viewing and use of their online medical records, and the use of smartphone health apps and other electronic devices in 2017 and 2018.

The full data brief can be downloaded below.  

How Big Pharmas Simultaneously Repel And Embrace Innovation

Pharmas are attractive for innovators pursuing approaches that are strongly endorsed by senior leadership and reasonably welcomed by the operational areas of the organization. The way some pharmas are working through the complex supply-chain logistics required for delivering CAR-T therapy or gene therapy at scale offer striking examples.

On the other hand, pharma organizations generally prioritize caution over agility, and incremental change over radical new approaches. Thus even innovation welcomed by the C-suite (like a lot of the original digital and data efforts) can run into the grindstone when those in the trenches can’t see the benefit, and experience only burden.

In general, large pharmas, like other big companies, are likely to remain generally resistant to profound innovation, though they will embrace and really go after specific opportunities they view as adequately validated or promising. Such traction requires explicitly endorsement and constant, active support from the top echelons of management if the approach is to even have a chance. Meanwhile, detached innovation initiatives reliably garner transient publicity but tend to achieve little durable organizational impact.

There’s likely a considerable opportunity to harness the many bottom-up innovative ideas to which pharma seems constitutively unable to respond; the robust startup ecosystem offers an attractive alternative or salvage pathway for some but not all of these promising approaches.

The full Forbes article can be viewed at this link.  

The law of genetic privacy: applications, implications, and limitations

Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase inthe amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.

The full article can be downloaded below.