Innovation Nation

Author: Brittain Bush

“Without change there is no innovation, creativity, or incentive for improvement. Those who initiate change will have a better opportunity to manage the change that is inevitable.” - William Pollard, Ph.D.

Healthcare. To simply whisper this word in a crowded area can evoke outrage and pain, while also serving as a line of division between people. What once was a word that was associated with increasing quality of life has become politicized and hijacked by politicians, insurance companies, and lobbyists alike to control industry and line their pockets. Because of this, costs go up and the risk of negatively affecting quality has increased. As a nation, we aren’t that great at spending within our means. We try to cut costs by means of “one-size-fits-all”, but that isn’t always effective. However, there is at least one area in which we, as a nation, excel: innovation.

For our many pitfalls in our messy healthcare system, America does a pretty good job at innovating. Single-payer systems—that we find in countries liked Canada—fail in many ways, one of which is the long approval process for new drugs. Senior fellow at Stanford’s Hoover Institution Dr. Scott Atlas writes in the Wall Street Journal, “Single-payer systems have proved inferior to the U.S. in outcomes for almost all serious diseases, including cancer, diabetes, high blood pressure, stroke and heart disease.” This is a serious problem as Atlas cites a 2011 Health Affairs study showing that the Food and Drug Administration approved 32 new cancer drugs from 2000-2010 compared to the 26 approved by the European Medicines Agency.

Pharmaceuticals are just the tip of the iceberg when it comes to healthcare innovations. Biosensors, trackers, voice assistants and AI are becoming massively popular tools for health. The U.S. is a leader in these areas in many ways, such as Apple’s Series 4 watch that has an ECG feature. This smartwatch could potentially detect atrial fibrillation and save countless lives by empowering the patient and putting them in control of their health rather than relying solely on their provider, insurance plan, or local representative. The patient in turn becomes more educated as they use devices like the Apple watch to track their health. Innovation democratizes health by empowering the smallest minority: individual patients.

Healthcare innovation doesn’t just stop at new therapies and devices but can also include payment systems. As new treatments are invented, their initial costs can be steep. In Reason Veronique de Rugy explains that outcomes-based pricing might be a sufficient model to pursue and expand. De Rugy writes, “Agreements between manufacturers and payers could allow prices to adjust according to the outcome as measured by a variety of possible health metrics. A treatment that fails to work within a certain time could result in no payment owed.” While these value-based payments (VBP) agreements already exist, they are restricted by heavy government regulations such as anti-corruption policies. De Rugy continues by stating, “The Anti-Kickback Statute seeks to prevent exchanges of value between manufacturers and other parties that might influence drug purchases, but it doesn't allow for payment models that rely on measures of value instead of volume.” In a December 2017 white paper from Duke University researchers, they write:

“…consider a VBP arrangement between a device manufacturer and a provider wherein the manufacturer would agree to reimburse the provider’s costs associated with hospitalization resulting from a defective device or a device that fails to produce agreed-upon outcomes. This arrangement implicates the [Anti Kickback Statute] because [the Department of Health and Human Services Office of the Inspector General] considers the reimbursement of potential ancillary costs to be ‘remuneration’ that can influence providers to purchase the device.”

Innovation, especially in healthcare, is something America needs to continue to embrace. As single-payer systems gain popularity, it is important to take a step back and realize that we’d be losing a lot with universal healthcare, and innovation might be the most devastating loss of all. While I do appreciate that single-payer systems are intended to focus on the collective patient population and treating as many people as possible, I believe we need to make sure we empower and care for the individual patient first. Let’s first better understand how we can best treat the individual and educate them on driving their own health before we focus on a wider population. There are many unknowns and complexities in healthcare. That’s just what happens in a country of nearly 330 million people, and a growing world population of nearly 8 billion. But here at the USC Center for Body Computing, we know who we are. We are a center for innovation in digital health.

HIPAA Isn't Enough: All Our Data is Health Data

Author: Mona Sobhani, PhD

UPDATE: see the full post on Medium here and my conversation with Charlie Warzel of the New York Times Privacy Project here.

I’ve been thinking for a while now that the definition of Personal Health Information (PHI) is outdated and I’ll explain why below.  Because of this fact, one of two things are true.  Either the federal law that protects PHI, HIPAA: (1) should apply to all types of personal data, including location, activity, and social), or (2) is no longer relevant, and broader personal data regulations are needed to encompass all data related to health.   

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To be clear, HIPAA is a wonderful legislation that protects patients.  Without HIPAA, a health plan could sell a patient’s data without the patient’s permission to, let’s say, an employer who could use it for company decisions, or to a bank who could use the information to deny a loan.  The problem with HIPAA is that it makes one huge assumption: that health status can only be inferred by the types of personal health data covered by HIPAA. 

In this era, though, can we confidently say which personal data is related to health and which is not?  Social determinants of health, such as poverty, education, gender, ethnicity, and employment account for ~60-80% of our health (1–3) – and all those types of information can be collected, or at least inferred, by the massive amounts of personal information that is now readily collected online.  Beyond social determinants of health, specific social network data and physical activity, sleep, and social interaction data correlates with, and can even predict, depression, suicide risk, and mental illness (4–8), as well as risky behavior that can lead to bad health outcomes (9).  The predictions are so strong that Facebook has a suicide prediction and intervention program (10).  If all of this personal data can help predict past, current and future health states, shouldn’t it also be protected?

Some may argue that, yes, with all this de-identified, aggregated data, we can predict health trends, but it’s all anonymous, so what’s the issue?  In fact, many companies and organizations have claimed that sharing de-identified data is not a privacy risk.  However, we now know that it can be rather easy to re-identify many different types of data.  For example, a recent study showed over 90% accuracy of re-identifying individuals from physical activity data and demographic data (11).  Re-identification has also been found to be possible using online search data (12), movie rating data (13) , social network data (14), genetic data (15), social network metadata (16), and wearable data (17).  A recent, and terrifying, New York Times article (18) shows how location data can be used to identify individuals, because it turns out there’s only one person who lives where you do, works where you do, and that has your exact daily routine. 

 Even if the definition of PHI were to change to include these other data, tech companies would probably still not be considered “covered entities” – even though they are the largest hoarders of our personal data.  With the current digital landscape, either HIPAA needs to be updated to cover all relevant data and entities, or maybe we need new regulatory frameworks.

 

REFERENCES

1.        O’Neill Hayes T, Delk R. Understanding the Social Determinants of Health.; 2018. https://www.americanactionforum.org/research/understanding-the-social-determinants-of-health/#_edn9.

2.        Racial and Ethnic Health Disparities What State Legislators Need to Know.; 2013. http://myhealthoutcomes. Accessed January 25, 2019.

3.        Magnan S. Social Determinants of Health 101 for Health Care: Five Plus Five. NAM Perspect. 2017;7(10). doi:10.31478/201710c.

4.        Eichstaedt JC, Smith RJ, Merchant RM, et al. Facebook language predicts depression in medical records. Proc Natl Acad Sci. 2018;115(44):11203-11208. doi:10.1073/PNAS.1802331115.

5.        Wang R, Chen F, Chen Z, et al. StudentLife. In: Proceedings of the 2014 ACM International Joint Conference on Pervasive and Ubiquitous Computing - UbiComp ’14 Adjunct. New York, New York, USA: ACM Press; 2014:3-14. doi:10.1145/2632048.2632054.

6.        Rabbi M, Ali S, Choudhury T, Berke E. Passive and In-situ Assessment of Mental and Physical Well-being using Mobile Sensors. Proc . ACM Int Conf Ubiquitous Comput  UbiComp. 2011;2011:385-394. doi:10.1145/2030112.2030164.

7.        Puiatti A, Mudda S, Giordano S, Mayora O. Smartphone-centred wearable sensors network for monitoring patients with bipolar disorder. In: 2011 Annual International Conference of the IEEE Engineering in Medicine and Biology Society. IEEE; 2011:3644-3647. doi:10.1109/IEMBS.2011.6090613.

8.        De Choudhury M, Gamon M, Counts S, Horvitz E. Predicting Depression via Social Media. http://course.duruofei.com/wp-content/uploads/2015/05/Choudhury_Predicting-Depression-via-Social-Media_ICWSM13.pdf. Accessed June 13, 2017.

9.        Rivers C, Lewis B, Young S. Detecting the Determinants of Health in Social Media. 2012. doi:10.1371/journal.pcbi.1002616.

10.      Singer N. In Screening for Suicide Risk, Facebook Takes on Tricky Public Health Role. The New York Times. https://www.nytimes.com/2018/12/31/technology/facebook-suicide-screening-algorithm.html?mc_cid=03a239a9bd&mc_eid=105181941b. Published December 31, 2018.

11.      Na L, Yang C, Lo C-C, Zhao F, Fukuoka Y, Aswani A. Feasibility of Reidentifying Individuals in Large National Physical Activity Data Sets From Which Protected Health Information Has Been Removed With Use of Machine Learning. JAMA Netw Open. 2018;1(8):e186040. doi:10.1001/jamanetworkopen.2018.6040.

12.      Barbaro M, Zeller T, Hansell S. A Face is Exposed for aol searcher no. 4417749. The New York Times. https://www.nytimes.com/2006/08/09/technology/09aol.html?mtrref=www.google.com&gwh=82E5F9FB0A49332F37DFB3048879099B&gwt=pay. Published August 9, 2006.

13.      Narayanan A, Shmatikov V. Robust De-anonymization of Large Sparse Datasets. In: 2008 IEEE Symposium on Security and Privacy (Sp 2008). IEEE; 2008:111-125. doi:10.1109/SP.2008.33.

14.      Narayanan A, Shmatikov V. De-anonymizing Social Networks. In: 2009 30th IEEE Symposium on Security and Privacy. IEEE; 2009:173-187. doi:10.1109/SP.2009.22.

15.      Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying Personal Genomes by Surname Inference. Science (80- ). 2013;339(6117):321-324. doi:10.1126/science.1125339.

16.      Perez B, Musolesi M, Stringhini G. You Are Your Metadata: Identification and Obfuscation of Social Media Users Using Metadata Information.; 2018. www.aaai.org. Accessed August 15, 2018.

17.      Lane ND, Xie J, Moscibroda T, Zhao F. On the feasibility of user de-anonymization from shared mobile sensor data. In: Proceedings of the Third International Workshop on Sensing Applications on Mobile Phones - PhoneSense ’12. New York, New York, USA: ACM Press; 2012:1-5. doi:10.1145/2389148.2389151.

18.      Valentino-DeVries J, Singer N, Keller MH, Krolik A. Your Apps Know Where You Were Last Night, and They’re Not Keeping It Secret. The New York Times. https://www.nytimes.com/interactive/2018/12/10/business/location-data-privacy-apps.html. Published December 10, 2018.

 

New White Paper with CA GO-Biz: Cybersecurity in Healthcare: How California Business can Lead

We are proud to announce the release of the Health IT Cybersecurity white paper (below), in collaboration with the Governor’s Office of Business and Economic Development (GO-BiZ) !

Cybersecurity in Healthcare: How California Business can Lead

 Goal of Health IT Advisory Board White Paper

To evolve the concepts and practices that foster a business-friendly environment in California so that best-in-breed cybersecurity practices and solutions are available and adopted by digital health companies for their products and services.

Introduction

A primary objective of the Governor’s Office of Business and Economic Development (GO-Biz) is to support the growth and innovation of major industries in California, including healthcare.  As the healthcare industry seeks to innovate through the use of connected information technologies (IT), which has the potential to improve global health access and outcomes, cybersecurity education and implementation of practices are central to providing leading products that are safe and can be trusted.  To that end, GO-Biz has partnered with the University of Southern California Center for Body Computing to establish a Health IT Advisory Board comprised of public and private experts to encourage greater understanding and utilization of cybersecurity tools and products.  In this white paper, the Health IT Advisory Board outlines key issues and suggested public and private initiatives to encourage and foster leading healthcare cybersecurity practices within the state.

Background

This white paper was created by the Health IT Advisory Board, a multidisciplinary group of  experts appointed by the California Governor's Office of Business and Economic Development (GO-Biz). We represent California based technology, cybersecurity and healthcare IT educators and providers, legal experts, public and private companies and California state technology policy makers.  

Health IT and Digital Healthcare

The vitality of cybersecurity issues in Health IT has been highlighted by the increased attacks on health IT systems in recent years, so much so that in 2018 major national conferences of computer scientists and hackers (Defcon, Blackhat) have dedicated specialized talks and panels on the issue.  Additionally, legislation (California Consumer Privacy Act of 2018 (AB 375)) has recently passed in California, aiming to stem some of the emerging Health IT issues.  As this white paper will outline, there are many possible places for the state to guide development, but we recommend that it focus on the responsible refinement of the major regulation framework.  The Health IT Advisory Board can provide thought leadership on the pathway forward. 

Health information technology is information technology applied to health and health care. It supports information management across computerized systems and the secure exchange of health information between consumers, providers, payers, and quality monitors. Technology has greatly improved healthcare and healthcare outcomes, such as improving medication adherence in heart failure (Talmor 2018), improving glycemic control and reducing complications for patients with diabetes (Prahalad 2018), as well as increasing access to healthcare (Saxon 2016, Kvedar 2014). Continued innovation in healthcare requires commercial investment in health information technology and a deeper understanding as to how to create a robust system of security around the mass of data that these solutions are expected to generate.  Security will include not only technical components but workforce training and policies for upgrading software and handling data breaches, as well (Kruse 2017, Murphy 2015). 

Digital healthcare is supported by health IT and is a new model of healthcare delivery and management. This model of healthcare has the promise of more fully engaging the patient and collecting and providing continuous and more personalized healthcare information, education, disease prevention, security, and care (Shinbane & Saxon 2017). Digital healthcare is also unique in that it can provide healthcare without having to have the patient and care provider in the same place at the same time. This allows for unprecedented access to healthcare and requires the creation of new models of care, regulation, privacy and reimbursement. Digital healthcare has the potential to extend the reach of healthcare companies, systems and their experts by using IT technology and can reduce costs associated with bricks and mortar healthcare. Another benefit that digital healthcare and healthcare IT solutions provide is the ability to re-invent healthcare as a service.  In the same way that Uber changed transportation by providing on-demand access to transportation that focused on the needs of the transportation consumer, healthcare software and services can transform individual patient access and use of information.   

Creating a favorable environment in California for healthcare IT and digital healthcare innovation to occur requires incentives for individuals and organizations to take the risks to create, test and validate their solutions. Creating a hub of innovation in healthcare IT in California has the potential to establish California as the hub for solving the most complex challenges in healthcare.  This activity can drive improvements in the health and economy of California and opens the door to providing worldwide access to these solutions.

From a cybersecurity standpoint, protecting health IT and digital healthcare information and systems is complex. There are existing laws that provide data privacy and security provisions for safeguarding medical information, such as the Health Insurance Portability and Accountability Act (HIPAA).  However, HIPAA may apply to information collected with digital health tools in some but not all situations.  There are a myriad of other cybersecurity considerations that do not fall under HIPAA regulations but are critically important to ensuring the availability of health IT technology and its ongoing safe and effective use  (Cooley 2018 pt.1, Cooley 2018 pt.2). Cyber protections need to extend beyond confidentiality and include safeguards for data integrity and availability. This will protect against potential exploits such as manipulating and falsifying medical data, as well as protecting against denial of services (DDoS) attacks that can prevent access to medical data systems (WannaCry, Petya). 

Currently, cybersecurity legislation for digital healthcare is not yet well established. However, there are a number of pending state and federal bills.

Our board recognizes that cybersecurity awareness and practices have to be implemented on an individual and institutional basis. Like environmentalism, these practices are continuous and require education, research, multidisciplinary engagement, policy and robust public-private partnerships. In order to create and foster an environment for companies in California to produce leading edge digital health solutions with robust cybersecurity protections, we identify and recommend activity in the following areas:

 

Area Recommendations

Education

●      Workforce development: Developing and maintaining secure medical technology and IT systems will require a workforce that is properly trained in the areas of security, as well as in the unique intersection of technology and healthcare. According to the cybersecurity job site Cybersee.org, as of August 2018 there are approximately 35,000 open cybersecurity jobs in California alone. Manufacturers will require these resources to ensure that products are developed in a secure manner and healthcare providers will require these resources support the secure implementation and ongoing operations of healthcare technology in the clinical environment. California is uniquely positioned to address this challenge as it is home to some of the world’s premier medical technology, healthcare delivery and academic institutions. We recommend that these organizations come together to build programs and curriculum to educate the next generation workforce  at the K-12, community college, and university levels as well as current healthcare workers through continuing education opportunities.  A recent example of work in this area is the California Cyber Innovation Challenge hosted by California Polytechnic State University.

●      Patient/Care Provider Education: The increasing utilization of technology in the healthcare delivery chain by both healthcare professionals and patients requires these users to have a deeper understanding of the impact that security of that technology has on its safety and effectiveness. Similar to how personal hygiene of both healthcare providers and patients (e.g. hand-washing, wound care) is critical to safe and effective treatment of disease, digital hygiene is becoming increasingly critical to the safe and effective delivery of healthcare. A medical device connected to a patient’s smartphone provides both healthcare providers and patients new opportunities to better manage their disease and health anywhere and anytime, but also requires that patients maintain the health of their smartphone to ensure its effective operation within the medical device ecosystem. We recommend the formation of a consortium of health IT companies, providers and government agencies to address the cyber literacy of patients. Create a public/private initiative to drive a cultural awareness campaign that highlights best cybersecurity practices and the understanding that cybersecurity is a shared responsibility.

Ethical Use of Data

●      Patient/Care Provider Education: There is increasing attention to the ethical collection and use of personal data collected by online service providers. Digital health data provides a significant opportunity to improve patient outcomes through improved disease management, patient engagement and clinical performance improvements in medical devices and products. In order to achieve these objectives through the use of patient health data there must be trust between service providers and patients that health data will only be used for its intended purpose and not beyond what the patient has authorized. This is a complex issue that has national and even global attention, especially with the EU’s Global Data Protection Regulation (https://www.eugdpr.org/) (read summary here) going into effect earlier this year (May 2018). The NIH has also outlined intent to provide guidances on the topic (https://www.nih.gov/about-nih/who-we-are/nih-director/testimony-21st-century-cures-implementation-updates-fda-nih).  It is beyond the scope of this committee to address this issue to the level it requires given the time available. We recommend that the medical technology, patient and healthcare provider communities collaborate to develop standards for the ethical use of medical information and mechanisms to provide transparency to patients. As example of this is the recently published privacy best practices published by the consumer genetic services companies, which covers issues such as informed consent, privacy, and accuracy (https://fpf.org/2018/07/31/privacy-best-practices-for-consumer-genetic-testing-services/)

Public - Private Partnerships 

●      Information Sharing & Collaboration: Cyber threats can emerge and spread rapidly impacting critical healthcare services. Open and trusted sharing of cyber threat information has been an effective mechanism for combating cyber threats in many industries. The Financial Services Information Sharing and Analysis Center or FS-ISAC has been the model for effective information sharing to minimize the impact of cyberthreats (https://www.fsisac.com/). The National Healthcare Information Sharing and Analysis Center (https://nhisac.org/) is similarly focused on the sharing of cyberthreat intelligence among a trusted community of critical infrastructure owners and operators in the Health Care and Public Health sector and the International Pharmaceutical & Medical Device Consortium (https://www.ipmpc.org/about) facilitates sharing best practices around data privacy.  California has also formed an organization, California Cybersecurity Integration Center (Cal-CSIC) (https://calcsic.org/), focused on identifying and responding to cyberthreats. Another good example of a public-private partnership with a life science focus is the Critical Path Institute (C-Path; https://c-path.org/).  We recommend that California develop incentives for healthcare organizations to participate in these information sharing organizations at both the federal and state levels. Additionally, we recommend that appropriate stakeholders from within the healthcare ecosystem are engaged at the state-level. FDA has led the way with incentivizing open information sharing in their Postmarket Management of Cybersecurity in Medical Devices guidance (https://www.fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm482022.pdf).

●      Cybersecurity Incentives: According to the U.S. Department of Commerce the medical device industry is responsible for almost 2 million jobs in the United States. However, 80% of the medical device companies have less than 50 employees and many are start-ups with little to no revenue (https://www.selectusa.gov/medical-technology-industry-united-states). Developing innovative medical technology that addresses complex clinical problems, while also ensuring appropriate cybersecurity protections can be challenging for many medical technology companies given their limited resources and the availability of cybersecurity experts as discussed above. We recommend that resources be made available to smaller medical device companies through information and sharing collaboration organizations as previously discussed. This could take the form of the development of minimum cybersecurity standards, cybersecurity resource centers, as well as in-person and virtual forums to facilitate collaboration. Additionally we recommend that public policy and purchasing organizations incentivize the development of secure products in a manner similar to incentives for innovation and time to market.

●      Public-Private Advisory Groups: For expert recommendations on information sharing and cybersecurity incentives, public-private partnerships should be forged, such as the Cybersecurity Task Force (http://www.caloes.ca.gov/Cal-OES-Divisions/Cybersecurity-Task-Force) from the California Governor’s Office of Emergency Services and the California Department of Technology, and the Precision Medicine Advisory Committee from the California Initiative to Advance Precision Medicine (http://www.ciapm.org/).

Research and Development  

The healthcare ecosystem is a complex network of varying stakeholders with different incentives and levels of technical sophistication. Introducing the complexity of cybersecurity into this ecosystem increases the risk that the opportunities provided by health technology will not be effectively realized. Significant research is needed to understand how to strike the right balance between effectively addressing cybersecurity in healthcare while also encouraging innovation and adoption of health technologies by care providers and patients.  Results of such research can then be incorporated into development guidance documents, such as the FDA’s Guidance on Premarket Submissions for the management of cybersecurity in medical devices (https://www.fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm356190.pdf). This includes research into ways of better protecting digital health solutions, as well as methods used by organizations to respond to cybersecurity vulnerabilities when they occur, including models for coordinated disclosure and risk notification and response. Research should also be done to better understand the interactions between cybersecurity and the use of health technology and implications on clinical outcomes. This research will be even more important as patients have more opportunities to be directly involved in their care through the use of technology, and as a result, also responsible for the security of that technology. We recommend that incentives be developed to encourage research into the critical area of healthcare cybersecurity. 

Government Policy/Legislation

There are numerous legislative and regulatory efforts related to cybersecurity and privacy that are occurring at both the state, national, and international levels. In addition to existing regulations like HIPAA, various global privacy regulations (e.g. General Data Protection Regulation, “GDPR”, https://www.eugdpr.org/), and FDA guidance on cybersecurity,  numerous other proposals are being considered around privacy and cybersecurity of Internet of Things (IOT) devices, which many times include medical technology. Given the size of many medical technology companies (discussed above), addressing the myriad of complex cybersecurity and privacy regulations can be cost prohibitive, if not impossible. Additionally, many of these regulations are focused on punitive actions after a cybersecurity incident or breach has occurred. We recommend that policymakers look to developing legislation and regulatory frameworks that encourage and support many of the proposals discussed in this paper including:

●      Workforce Development & Provider/Patient Education – Ensuring a capable workforce is available to develop security medical technology and that care providers and patients are equipped to effectively manage the cybersecurity of this technology.

●      Security Standards – Establishing flexible and responsive organizations and processes for the development of minimum security standards. Cyberthreats change quickly and standards organization need to be developed to respond accordingly.

●      Information Sharing – Encouraging open and trusted communication between healthcare organizations is critical to being able to respond to security threats and minimize impact to critical healthcare services; can build on current activities and organizations, such as the FDA’s activities including FDA post-market management of cybersecurity in medical devices, the Department of Homeland Security, the Energy and Commerce Committee, the CISO council and Health Information Trust Alliance, and the Health and Human Services Cybersecurity Task Force Report.

●      Cybersecurity Research – Incentives to encourage research to better understand how to effectively address cybersecurity risks in healthcare while encouraging innovation and adoption of technology solutions, which can lead to improved clinical outcomes and lower costs.

Policy efforts should focus on accelerating market access for organizations that develop and maintain secure medical technology in accordance with accepted cybersecurity standards.

Conclusions

There is massive potential for California companies and organizations to ethically lead and create digital health solutions that can improve the health of the globe. Already, California leads the world in technology innovation. We recognize that the protection of digital health data and use of this data is paramount to realizing the promise of digital health. We also acknowledge that providing protections for the consumer is a continuous process and will be a shared responsibility. The market for digital health is rapidly changing and, in the future, the emphasis will be on the consumer.  The effect of the evolving market on the individual, as well as the broader California economy, should be addressed now.  This white paper provides a template for defining, growing and encouraging activities that should occur in tandem to motivate California healthcare company growth and digital innovation.  

 

Advisory Board Members:

●      Darin Andersen, MBA, Co-Chair Economic Development Subcommittee, Cybersecurity Task Force, California Governor’s Office of Emergency Services

●      Bill Britton, Vice President of Information Technology and Chief Information Officer, California Polytechnic State University

●      Wainwright Fishburn, JD, Partner and Global Head, Digital Health Practice, Cooley LLP

●      John Mattison, MD, Chief Medical Information Officer and Assistant Medical Director, Kaiser Permanente

●      Leslie Saxon, MD, Executive Director, USC Center for Body Computing

●      Jesse Torres, Deputy Director/CA Small Business Advocate, GO-Biz

●      Chris Tyberg, Division Vice President Information Security, Abbott Medical Devices

●      Sid Voorakkara, Deputy Director, External Affairs, GO-Biz

●      Andrew Thompson, Chief Executive Officer, Proteus Digital Health

Want my digital health data? Convince me.

Author: Mona Sobhani, PhD

On the spectrum of personal data privacy, you’ll find me nestled far closer to the side of “none of my data is anyone’s damned business”.  Maybe I’ve been radicalized, having read one too many articles on the nefarious uses of personal data by governments and corporations.  Indeed, one look at my Netflix list would reveal my paranoid leanings.  Maybe I’m too skeptical, but news stories like the recent Facebook-Cambridge Analytica scandal don’t do much to relieve my concerns. 

So when I think about the topic of digital health, which aims to use emerging digital technologies and advanced analytic methods to forge progress on healthcare, I can’t help but react defensively. I find myself wondering why it’s not enough that you have my location, social, and purchasing personal information.  Now you want my health information, too?

But digital health needs our data and I was reminded why after attending a meeting last week.  The ultimate promise of digital health, as I see it, is to help solve personalized health.  What I mean by solving personalized health is that we want to move from a “sick care” system to a “health care” system where health problems are identified and treated early, or even prevented, on a personalized basis. The “X” factor needed to do that with unprecedented and exceptional efficiency is to have a lot of data from humans in various states of health on which to train algorithms.  Without that, digital health solutions may make healthcare more efficient by, say, improving communication between stakeholders and making it easier to give/get a prescription – but it won’t solve health.

However, that idea does not make it any safer to provide personal data.  The risks of cyber breach are still very real, and the average patient may not fully understand what those risks are.  To help patients make more informed decisions, it should be the responsibility of digital health solution providers to provide examples of risks, as well as explanations of how they intend to mitigate risks.

Realistically, it may take a long time to get to the point where the combination of the digital health wearable sensors and apps I’m using will be able to detect things like reduced immune functioning.  Take genomics as an example.  We have decoded the human genome, but we are not close to having every gene-to-gene-environment interaction mapped out, because research and development take time. This should be communicated to patients so they do not feel duped.

It should be the responsibility of digital health stakeholders to convince me to provide my data by using their product.  They can do that by properly communicating the issue of why they need my data, what are the possible harmful outcomes, and why it may take a while to see results. This way,  every patient will not feel as though digital health is another ruse for private companies to acquire my personal data for their personal profit.  And digital health can march forward to its goal of solving health.

 

The Future of Digital Health: Considering the Non-Tech Savvy Consumer

Technology has played a significant role in my professional, academic and personal life. When I think about the target market of every day digital health tools, it has dawned on me that there lies a challenge of integrating these tools successfully into our patient’s daily lives. But, that challenge doesn’t lie with a potential consumer like myself. As a computer scientist, I am more tech-savvy than the average millennial and I normally run towards the new gadget, not away from it.

A person without a chronic health condition who is not extremely-health conscious or knowledgeable about their health is less likely to have the immediate trust in a device or see the necessity to incorporate one in their daily routine. With this person there is bound to be friction when it comes to using and benefiting from digital health tools.

With that, I explore the inevitable question, whose job is it to convince the patients that digital health tools are worth using?

I believe it is the job of the digital health tool and its marketers to show and educate people what benefit they serve. For example with voice assistants in-home or embedded in cars or mHealth applications, a daily prompt is absolutely necessary. This looks like a simple, “How are you feeling today?” at a chosen time of day with eventual unprompted feedback on mood patterns. The gist is that people may need to be poked and reminded to use the digital health tol until they can see for themselves how these tools can help.

Normal people are not accustomed to collecting their own data and using it to make decisions on their health daily. So, they are going to have to be trained or guided. I believe there are three big hurdles to transitioning into a world where everybody is constantly remote monitoring their health and using digital health to the fullest extent.

The first hurdle is trust and security--consumers will not want to use any digital health tool if they do not feel the people marketing the tool are credible or that they have their security as a priority. Consumers will have to be convinced that what they are using will actually help them and is worth the effort of using.

The second is going to be education--we use words so often that mean absolutely nothing to the consumer (e.g. digital, artificial intelligence). These are complex terms are not only a turn off but they put consumers on a different page where they don’t necessarily see automatically that this tool could apply to them. This also entails safeguarding patients against inaccurate information.

The third is going to be cost and accessibility--if consumers cannot afford the device and it’s not covered by insurance or seemly backed by the healthcare system, they will not engage.

It’s no surprise that us in the tech and medical community live in a bubble. We are in the conversation on a daily basis and we understand the gaps of quality healthcare in our lives and how digital health fills that space. But for those who don’t easily see those gaps, we need to show them and help them understand why they matter and how “digital” can be their friend.

 

Finding the Holy Grail in Sticking to New Year’s Health Goals (hint: it may be linked to digital health tools, relationships and your age)

Saxon Apple watch.png

 After the weeks of partying, drinking, eating and other revelry during the holiday season, it makes sense that most of us, who do not share Keith Richard’s constitution, choose to abandon these non-sustainable behaviors with healthier ones in the New Year. The problem is anywhere between 46-88 percent of us abandon our good intentions within six months. According to a recent U.K. research study, the most common reasons for failing at New Year’s health resolutions were setting unrealistic goals (35 percent), not keeping track of progress (33 percent) and forgetting to do the activity (23 percent).

This is great news for the growing wearables market which can solve the last two challenges. According to IDC, more than 125 million wearables shipped this year – a 20 percent increase over last year – and overall the market forecast is almost double growth to 240 million units by 2021. However IDC also reported the type of wearable that will fuel this growth is evolving from basic wearables that just track fitness such as steps walked or calories burned (think FitBit or Xiaomi) to smart wearables with third party apps  creating a multi-purpose device (such as Apple Watch 3’s voice, data and music streaming capability).

The Eyes Have It

The smart wearable is the direction taken by one of our partners at the USC Center for Body Computing (CBC), VSP Global’s innovation lab, The Shop. VSP’s development of the fashion meets tech meets health LevelTM smart glasses, which have a biometric sensor embedded in the eyeglasses, not only provides a health tracking form factor that prescription eyeglass users wear every day without thinking about it, but I give VSP kudos because they took the time to engage with us in a research study to understand how to get wearable users invested in their health for the long-term.

What our study revealed is Level users maintained or increased their activity by 20-25 percent based mostly on relationships. For instance, the digital coaching app that comes with Level provided expert guidance on continued activity, support and encouragement from the user’s social networks kept them motivated and a charitable giving component brought users a “do good for others” element to their health goals. In other words, relationships can make you healthier. It’s not just about personal goals, it’s about engaging with others, getting needed support and giving back.

Since Juniper Research has identified smart glasses as the highest growth sector of the consumer wearables segment over the next five years, we’re excited for the launch of Level later this year.

Age and Life Satisfaction Make a Difference

One of the other success factors from our study that resonated with me personally was that older age participants—63 percent were over age 40—along with higher life satisfaction scores also predicted higher activity levels.

Since I founded the USC Center for Body Computing 12 years ago I have watched the growth and impact of digital health tools transform medicine and health care and transform my personal behavior.

I feel like it’s my responsibility to find the most compelling use cases for digital and wearable technology, so in the fall, as we were planning to use Apple watches in a study with U.S. Marines, I wanted to get some more ideas about how to use the watch in the water to help train so I kicked started   my New Year’s Resolution for better health.

Using my Apple Watch, I resolved to swim 4-6 miles a week and to measure, increase and improve my performance over time. I wanted to test how tracking my swims in detail (split-times and strokes), with this technology could be used to motivate and keep the workouts fresh.

I’ve always been a swimmer, but over the years, my trips to the pool can feel like my trips to the aqua prison. Other than better flexibility and fitness, what I gain from swimming is relaxation and better emotional resilience throughout the day. However, like most workouts, swimming can feel repetitive and boring.

Tracking with the watch works. I’ve gotten a ton of ideas about how to program and use the watch to provide me with insights and I’ve also become addicted to the data it gives me. It has become really easy and natural for me to set new goals and connect  the dots from my workout data to my overall health,  especially with the comparative summary  data the watch gives for workouts from one day or week to the next.  My workouts in the pool now yield dynamic and deeply personalized data, that informs the next workout and keeps me interested and motivated.  And, I get encouragement from my team at USC CBC where we all have watches and share our workouts. I like competing with the younger pipsqueaks!

So whether I am seeing my cardiology patients, or working with our USC CBC partners on digital health solutions, my swimming is not about generic  health goals but more about personalized data I can be creative with and that enable me to make  better health decisions in the 23 hours and 20 minutes a day I am not swimming.   

Women and Health Resolutions

As long as I’m blogging, I’ll make another point about exercise that I think is really relevant to the mental and physical health of women. It is my belief that most American women, due to lifelong cultural conditioning, have an adjustment disorder to their weight (regardless of their actual weight) and that we often equate weight or the desire for weight reduction, with exercise.

Weight and exercise need to be thought about very differently, to allow women to gain the confidence to be more comfortable with both. Weight is pretty much exclusively related to food intake. Exercise is about making an investment into one’s mental and physical health.  Women, who already have a hard time being comfortable and confident about their weight,  typically choose to  focus on  losing  weight as a New Year’s Resolution rather exercise as a goal in itself.  The former only feeds an insecurity and the latter may create a path toward health and strength that can hopefully build more confidence around how a woman feels about her weight.  

But the Holy Grail of health and happiness, informed with personalized and dynamic data is what I believe digital health tools, such as smart wearables, will give to all of us. For women, the ability to separate weight concerns from health goals, the ability to think about how healthy habits over time build confidence and health longevity and adding more quality years – healthspan – to our lives. If we can achieve this then we can achieve better focus and performance whether we are a marine in training or a woman trying to get healthier.

Here’s to a healthy and happy new year!

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Creating Accessible Solutions in Healthcare

I recently participated in an accessibility event with the University of Southern California (USC) Center for Body Computing and the Special Hope Foundation, which promotes the establishment of comprehensive healthcare for adults with developmental disabilities.

The Center for Body Computing has a rich history of creating technology that helps people with disabilities. Their goal was to bring together a diverse set of people and organizations to discuss possible projects that would influence the healthcare industry to create accessible, digital solutions.

I was invited to participate and contribute my expertise about accessible digital product design. IBM has made accessibility an integral function of its IBM Design Thinking and IBM Design Language,and has embedded accessibility into its training sessions for new designers. By placing accessibility at the forefront of the design and development process, IBM is delivering better user experiences for people with disabilities and the growing aging population.

Read more...

Special Hope and USC Center for Body Computing: The Promise of Digital Tools for People with Disabilities

We’d like to share some exciting news

The USC Center for Body Computing and the Special Hope Foundation are joining forces to encourage companies to design digital health tools for people with disabilities.

Please read the details of this collaboration, share with others, and feel free to ask questions.

LOS ANGELES, Oct. 6, 2016 /PRNewswire-USNewswire/ — The University of Southern California (USC) Center for Body Computing (CBC), the digital health innovation incubator of the Keck Medicine of USC medical enterprise, announced The Special Hope Foundation has joined its membership to ensure future digital health tools and services meet the needs of those with disabilities.

The Special Hope Foundation, based in Silicon Valley, has been a leading advocate in identifying the void in the American health care system when it comes to people with developmental disabilities, defined as a diverse group of chronic conditions due to mental or physical impairments such as autism, Down Syndrome and cerebral palsy. According to the U.S. Census Bureau, an estimated 48.9 million Americans – almost 1 in 5 citizens....

How Virtual Reality Will Keep Us Healthier

This post by Rachelle Chong was originally posted on Pryme

Virtual reality (VR) mostly makes headlines among gaming enthusiasts big and small.  Gamers love to don a VR helmet and enter a fantasy world where they are transformed into a warrior, goddess, or other character.  One of the most promising uses of virtual reality, however, is how it will transform healthcare in the immediate future for all of us.

I just got back from attending the tenth annual Body Computing Conference at USC Keck School of Medicine, Center for Body Computing.  A number of the standout presentations used virtual reality (VR) applications to improve health care outcomes.

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Fitness Trackers and Beyond: Digital Health's Future

Greetings from the Silicon Beach, Los Angeles! My name is Andrew Keibel. Originally an East Coaster from Hartford, Connecticut, I moved to LA 3 years ago to complete an internal medicine residency at the University of Southern California (but really to surf more).  I’m also the country’s first Digital Health Fellow. This position was created by the USC Center for Body Computing (CBC) under the guidance of digital health guru Dr. Leslie Saxon. 

As a Digital Health Fellow, I will be dedicating a year to studying the current environment of digital health, and specifically how medical technology, virtual and immersive therapy solutions, mobile apps, biosensors, wearables, the internet of things and big data can be utilized to enhance the quality of care and most importantly quality of life of patients. Created in 2007, the CBC has since established its role as leader driving innovation in the digital health world, and over the course of the year I will utilize this blog to document my experience and highlight innovations being developed here.

I’ll start things off with an article from Fortune Magazine entitled: “McDonald’s Recalls Faulty Happy Meal Activity Trackers”. According to Fortune, McDonald’s has formally recalled an activity tracker being offered with Happy Meals after receiving more than 70 reports of burns and skin irritations from people who wore the wristbands. This article highlights an important point: the commoditization of wearables and sensors is increasing the prevalence of digital health technology in our culture and lifestyles. There will always be both a leading and trailing edge of innovation. As more products and developers enter the market there will be failures and setbacks, but commoditization is essential to development and driving the innovation cycle.

Fitness and activity trackers represent an important segment in the digital health space. And although there is still a great deal of exciting innovation happening in this field, including a study happening at CBC utilizing daily eyeglass with integrated wellness tracking technology (How an insurance company is trying to craft eyeware of the future), it is important to think of digital health as more than just the traditional wrist-worn fitness bands. Our active projects extend beyond the wearables with projects including: a virtual care clinic where patients interact with virtual representations of physician specialists instantly on-demand through their mobile phone, immersive experiences utilizing 3D cameras to engage and educate surgical patients, and a mobile application to coordinate care teams and improve management of complicated end-stage heart failure patients. So for now, skip the Happy Meal and follow me as I keep you updated on what’s happening on the leading edge of digital health innovation.

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