Transparency Vs. Privacy in Healthcare: Finding the Balance that Improves Treatment and Protects Patients

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Sharing your personal health data is not something to take lightly. However, uncertain diagnoses and unusual comorbidities can leave patients desperate to gain any insight into their condition. Worried patients often join online threads and Facebook groups to share their symptoms, hoping someone else can shed some light on their condition. They start to self-diagnose and choose their own treatment paths. This can be dangerous though and has been shown to lead to health complications that are at times irreversible.

In the age of increasing technological advancement, healthcare remains crippled with paper forms, faxes, data entry and excel-based analysis of health data -- supposedly to protect patient privacy. Due to stringent privacy laws, patient data is scattered in multiple forms and across multiple technologies. Such mechanisms are intended to serve the patient, but when coupled with dated technology use, they cause more problems than solutions. They limit necessary data sharing and transparency.

In patients with brain-based disorders, accessing care and sharing one’s symptoms becomes especially complicated. The burden of care coordination lies on patients and their caregivers. Given the number of comorbidities in many cases, multiple different clinicians and care providers need to collaborate and be coordinated in order to provide the right care and deliver better outcomes. When patients must jump through hoops to do so, the industry ends up driving a standard of privacy that patients themselves don’t want to comply with.

In a study published in Autism Research, researchers addressed the importance of obtaining a deeper understanding than the general overview received during a short office visit. The study focused on acquiring a better picture of autism’s day-to-day impact, as researchers emphasized how monitoring these effects leads to better insights and patient-centered care.

Clinicians also agree that a 360-degree view of a patient improves outcomes, and that accessing this view depends entirely on transparent information sharing. Unfortunately, because patients encounter barriers just to get their own data, access a clinician or get their question answered, it’s virtually impossible to obtain the data necessary for a 360-degree view.

A recent Stanford study showed that most clinical trial participants consider the benefits of sharing individual data to outweigh the risks. When surveyed about the idea of making personal data collected in studies widely available (after individual identifiers were removed), 93% of respondents were very or somewhat likely to share their data with scientists. Most respondents said they’d still share their information regardless of the purpose for which their data would be used.

Trayt’s primary focus is to improve outcomes by streamlined tracking and sharing of a patient’s symptoms, environment and treatments. Trayt upholds the crucial aspects of privacy by creating maximum security and ensuring that patients consent and are fully aware before they share any data. Trayt’s digital platform further removes the barriers to transparency, enabling collaborative communication. Since patients’ symptoms are evaluated through long-term data analysis platform, valuable insight into how a patient’s disorder affects them is never lost. Our core functions help easily and securely share this beneficial information amongst chosen family members and clinicians; when clinicians and families can access and understand the best data, they can work together better. This increased transparency and data sharing not only improves patient satisfaction and clinician work flow, it also impacts costs and outcomes.

In an industry where clinical trials have an average of 30% attrition rate and 50% overall compliance with following treatments and completing psychometric outcome measures, Trayt’s collaborative and patient-centered platform has proven to create significant efficiencies and even more meaningful benefits to research and results. Instead of spending time and money on paper forms, faxing and data analysis, researchers can collect, access, and analyze data in an integrated, online platform during observation and in between visits. By digitally connecting with patients through a HIPAA compliant program, researchers obtain better insights while increasing subject compliance and retention through notifications, frequent outcomes tracking, and other patient engagement tools.

New trends towards value-based care and outcomes driven economics are causing providers and patients alike to demand better outcomes at a lower cost of care; the industry’s current methods cannot meet these demands. Given that the average family must travel 90 minutes before they reach a care provider in neurodevelopmental and other neuropsychiatric disorders, Trayt is partnering with HIPAA compliant telemedicine platforms to increase transparency and collaboration and help families and physicians find the best treatments quicker – without all the added costs, travel times and bureaucratic delays.

Trayt hopes to align the medical industry so patients don’t need to solely rely on online support groups and self-diagnosis methods to gain insight into their conditions. Protecting personal information is still of tantamount importance, but transparency and improved communication are essential to breaking information silos and providing better outcomes. We support the sharing of health data between patients, personal family, clinicians and researchers for a patient’s benefit, but we never sell our patient data, ever. Trayt is 100% compliant with HIPAA standards that protect Patient Health Information. Our purpose is to enhance the insights gathered to benefit you -- whether you are a researcher, clinician, patient, or family member.

In an age where opportunities for information sharing abound, Trayt recognizes the need for gathering and sharing detailed and holistic patient data, while maintaining privacy and security. We pride ourselves on finding the balance that protects patients and their data, while creating useful and safe transparency -- information sharing that you are in charge of, collaboration that improves outcomes, and efficiency. Trayt removes the barriers patients too often encounter in healthcare. As a result, we can all move towards a world of better treatment and better data security.

References:

http://fsi.stanford.edu/news/most-clinical-trial-participants-find-benefits-outweigh-risks-sharing-personal-data

https://www.spectrumnews.org/opinion/q-and-a/family-perspectives-improve-clinical-trials/

How Developmental Disorders Impact Marriages: A Closer Look

It’s true that having a child with a developmental disorder (DD) is never easy; the accompanying uncertainty and stress of finding quality treatments, diagnoses and balance can take a toll on a couple’s marriage. However, the media’s portrayal of the impact of DDs on families and marriages often generalizes, painting a truly bleak and somewhat misleading picture -- one that makes divorce seem like it’s looming around the corner for every family.

While many people are quick to assume that divorce rates are higher for families under these circumstances, decades of studies have produced unclear findings on the matter. A 2004 meta-analysis of six studies found that parents of kids with a DD had an average of 5.97 percent more divorces than parents without a kid with a DD. On the other hand, a literature review of current studies explained that having a child with a DD has been shown to have small negative effects on a marriage, but that most marriages last and are reported to be of good quality. In fact, over 70 percent of these marriages do survive.These studies show that the marital quality of parents with children with DDs varies widely and that while we should not generalize, identifying trends that cause marital strain can illuminate ways to alleviate stress and improve the lives of couples, families and children alike. For example, research revealed that behavioral issues (such as those associated with ADHD and ASD) were “consistently shown to be the strongest predictor” of parenting stress and parents of children with more frequent and severe behavioral problems resulted in lower marital satisfaction. Research on families of children with autism also found parenting stress to be more strongly associated with the severity of behavior problems than intellectual disability status or other autism symptoms.

In terms of other stressors, one study theorized that “the uncertainty surrounding ASD diagnosis and often long diagnostic odyssey to reach a diagnosis of ASD” contributed to a worsened sense of well-being among parents of kids with ASD. By contrast, studies of parents of children with Down syndrome noted that “the certainty and early timing of diagnosis of Down syndrome, relatively low levels of parenting stress, positive views on caretaking, and overall positive psychological well-being experienced by parents of children with Down syndrome may help promote positive marital interactions.” Consequently, it appears that marital stress directly relates to specific diagnoses and issues of uncertainty and behavior, rather than affecting all marriages equally.

Since marital quality and a child’s well-being both have an effect on one another, this research is crucial. Just as the severity of a child’s disability or particular diagnosis can affect a marriage, environmental factors such as marriage quality have been found to strongly impact a child’s well-being and development. Research further predicts that the marital stress of parents of children with DDs experience could be ameliorated with the creation of a supportive network and family-focused interventions.

Uncertainty of diagnosis and feeling a lack of control, especially as it pertains to ASD and behavioral issues, seem to be prominent causes of familial and marital stress. To combat these factors, Trayt focuses on streamlining communication with doctors and giving parents the ability to track symptoms and see how treatments are working. In doing so, Trayt can improve diagnostics and efficacy of treatment while providing a platform for both parents to feel more in control of their child’s health. As such, Trayt hopes to revolutionize healthcare, reduce the stress that too often comes with a child’s DD diagnosis and give families and their children a better quality of life.

Community Perspective: Trayt CTO Hitesh Kalra on the future of AI in the neurodevelopmental space

Recently, there has been a lot discussion around artificial intelligence (AI) and machine learning in the diagnosis and treatment of autism and other similar disorders.

There is clearly vast potential, but the critical point is that these technologies must both learn from and serve existing medical trends and protocols. The fundamental nature of child development and social communication is not well understood by human experts, so technology must aid, not oversimplify, its approach to symptoms, conditions and treatment associated with autism, Fragile X or other similar disorders.

For machine learning to truly be effective, it requires vast amounts of training data. With the advent of connected/IoT devices in the marketplace, we will see an increase in the frequency and variety of the types of signals that can be automatically and passively captured, providing a slew of real-time data for machine learning algorithms to learn from.

Trayt is well positioned to contribute to this trend. We are working to gather information from sleep monitors, heart rate sensors, audio sensors, connected cameras and environmental sensors; then, we will correlate it with additional information captured from the Trayt app, such as symptoms severity and frequency, genetic information, medication and therapy adherence information, side effects, patient demographics, medical background and more.

We will not only be able to continuously expand the breadth of information available from what we capture, but also offer a much more nuanced set of insights to our users. This ongoing addition of sophisticated data will help to refine the findings and allow for a real-time view of progress of patient outcomes, which will in turn help to tailor treatment and optimize the effectiveness of medications and therapies.

Robots are also being considered as a tool for treating autism symptoms. However, my view is that for kids with social-communicative issues, nothing can replace face-to-face interactions with other kids, their therapists or other adults guiding the interactions. Robots have a place as a prop in the environment where they can capture signals - like visual posture, face emotions and sound to capture voice - which can then be fed into machine learning algorithms to measure the effectiveness of the therapies and patient outcomes over time. However, they should not be used in place of real human interaction.

While there has been positive progress in the application of advanced technology towards treating autism and similar disorders, it should continue to do so under the caution that it is not, and might not ever be, in a place where it can be relied upon independently. The human mind is far too complex to currently be captured and adequately transcribed into a line of code - especially the minds of children who are still in their developmental phases and are affected by social communication disorders.

Trayt helps bridge the connection between authentic human interactions and the largescale sourcing of data that will help to inform these technologies and continue to improve the lives of patients with autism and other disorders.

Community Perspective: Trayt CMO Dr. Carl Feinstein on AI in Diagnosis and Treatment of Autism

Community Perspective: Trayt CMO Dr. Carl Feinstein on AI in Diagnosis and Treatment of Autism

For many years, the tech community has made important contributions to the medical sphere. For example, the development of protheses has helped people with disabilities overcome sensory deficits, loss of function and hearing/speaking impairments. And now, technologists are turning their efforts to remediating social communication barriers that hamper people with autism spectrum disorders (ASD) in their adaptation to the community, school, work and cultural/recreational opportunities.