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Your Health Records, Your Rights: Here’s What To Know About Your Electronic Health Records


As much as 30% of the entire world’s stored data is generated in the healthcare industry, where a single patient history typically generates ~80 megabytes in imaging and electronic health data each year.

The explosive growth in digital medical data allows healthcare providers to take advantage of greater intelligence in the care of patients. To be the best advocates for our own health, patients should understand their rights to their most personal data.

You have rights that protect your health data privacy, security and so much more. In February of 2009, the Health Information Technology for Economics and Clinical Health (HITECH) Act (as Title XIII of the American Recovery and Reinvestment Act of 2009) required healthcare providers to demonstrate “meaningful use” of electronic health records by 2015. Part of the demonstration of meaningful use requires that healthcare providers provide you, their patients, with electronic access to view and download personal health information within a reasonable timeframe from your last doctor’s visit. This is typically within 1-4 days of your visit. As a result, healthcare facilities have adopted Electronic Health Records (EHR) systems for electronically managing your healthcare information, and typically provide online patient portals as the electronic method of choice for providing you access to your records.

Most healthcare providers in the United States have implemented patient portals to provide you access into your personal health records. Through a secure connection, you can directly message your doctors with questions, refill prescriptions, and schedule appointments. You’re even able to view and download your personal health records. Furthermore, access to your personal health records enables you to directly contribute to research, advance science, and drive discovery.

LEARN HOW YOU CAN DO MORE WITH YOUR PERSONAL HEALTH RECORDS


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


New Ideas Emerge in Alzheimers

New Ideas Emerge in Alzheimer’s Research


Take a look at any recent major news publication. Information about the latest scientific discovery or technological advancements can be found in nearly every issue.

Yet for a disease that currently affects over 5 million Americans and is projected to affect almost 14 million by 2050, shockingly little progress has been made toward effective treatment, let alone a cure. Alzheimer’s disease has perpetually puzzled researchers and healthcare providers alike, leaving the millions of people affected by the disease to wonder if there is any hope. 

Alzheimer’s disease (AD) is a multifactorial condition. This means no one single cause is responsible for development of the disease. While there are clearly both genetic and environmental contributions, the specific cause or tipping point likely varies from person to person. This fact alone makes identifying a silver bullet treatment plan very difficult. How do you effectively target a disease with a single treatment if the disease has multiple and varying causes? Additionally, AD can be challenging to diagnose, especially in the early stages of disease when available treatments may be the most beneficial. Many dementias look similar, although their underlying causes may vary dramatically. The lack of apparent progress towards treatments to slow progression and a prevention or cure could certainly be attributed to this combination of factors, at least in part.

Why is there not a cure for Alzheimer’s yet?

Although diagnosis and treatment of AD face a variety of challenges, there has been a significant amount of research focused on potential treatments and possible cures. 

Researchers were confident a treatment would be identified within mere decades. Unfortunately, the research performed, and subsequently published, all centered around the single, prevailing theory that beta-amyloid accumulation was the target. A recent investigative report published by STAT described how research that explored ideas outside this commonly held belief was discounted, unpublished and in some cases ended the careers of researchers desperate to find answers. Opportunities for novel discoveries, breakthroughs and unpopular hypothesizes rarely emerged due to this tunnel vision within the AD-research landscape. 

But can the lack of AD treatment or cures be solely placed on the shoulders of research suppression? Likely no. Funding for AD research has historically been significantly lower than many other common diseases. Until recently, National Institutes of Health (NIH) budgeting provided less than $500 million for research focused on AD and other dementias. In comparison, funding for AIDS research neared $3 billion and cancer research received more than nearly
$5 billion in funding. 

The funding disparity is fortunately lessening as significant increases in the NIH budget for AD have been made in recent years. Community-supported fundraising campaigns like the annual Walk to End Alzheimer’s are also a growing source of not only fundraising, but awareness of the disease. 

In light of these recent advances, it is easy to see how the combination of novel research suppression with lack of funding certainly contributed to the absence of significant discoveries over the past several decades. 

New ideas emerge in Alzheimer’s research

Fortunately, research focusing on different treatment targets is beginning to emerge. Scientists are now recognized and supported for their work around ideas that years ago would have been ignored at best, stifled at worst. Currently, there is early-stage research evaluating exciting and promising ideas, such as the use of vaccines to aid in prevention and gene therapy to help alleviate symptoms. And data collection focused on the variety of potential risk factors can also be used in a more person-centered way given the recent advances in daily health monitoring tools. 

Similarly, while there is limited scientific evidence, researchers continue to explore links between herbs with anti-inflammatory and antioxidant properties like turmeric on disease prevention and progression. 

Yet more is needed for research, and the missing piece may just be you. You as the patient. You as the caregiver. You as the unaffected. You can help advance discoveries in Alzheimer’s disease.

Dawn Barry, Board Chair of the Alzheimer’s Association San Diego/Imperial Chapter and LunaPBC™ Co-Founder and President explains “we must start getting everyone involved in research. Not just people affected but everyone in the ecosystem.” This is why LunaDNA is so passionate about providing you a safe and trusted place to partner with researchers.

“Your data is never sold to third parties and you always have the option of ‘unsharing’ your information,” Barry says. LunaDNA™ also provides a way to overcome the challenge of retrospective research, where data is only obtained after the disease has developed. Barry argues a better approach is to begin collecting information earlier, as “we have the best chance of finding markers if we begin to study and track health before disease onset happens.” 

Without people who are willing to participate, research would simply not exist. If you or someone you love is affected with AD, consider if research participation is right for you. 

The combination of increased patient and community participation, funding and the scientific community’s acceptance of a wider variety of research ideas is promising. Many are optimistic this combination of factors will finally move us closer to finding legitimate treatments for AD.  And perhaps these treatment breakthroughs will lead to the cure so desperately desired by the millions of people affected by AD every day.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Prioritize the Safety of Your Health Data

Here’s Why You Should Prioritize the Safety and Security of Your Health Data

By Lena Huang, LunaDNA Contributor


Over the past few decades, scientists and researchers have made great strides in understanding how to use genomic data to drive important medical discoveries.

However, as the scientific community continues to gain access to genomic data at rapid speeds, concerns about the privacy of that data are emerging. Today, there are hundreds of companies that offer genetic testing for thousands of disease-causing genes. Many of these companies also offer whole-exome sequencing, in which all of an individual’s protein coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

Over the past few decades, scientists and researchers have made great strides in understanding how to use DNA data to drive important medical discoveries. However, as the scientific community is beginning to gain access to more data than ever before, concerns about the privacy of that data are emerging.

Today, there are many companies that offer genetic testing for disease-causing genes. Some of these companies also offer whole-exome sequencing, in which all of an individual’s protein-coding genes are analyzed for mutations that may cause disease. While this testing can save lives, it also creates a large amount of data that may or may not be secure.

DNA data plays a significant role in accelerating medical breakthroughs, so it’s no wonder why more tools are becoming readily available to drive discovery. Advances in technology allow doctors to analyze genetic data quicker and can be used to discover a person’s risk for developing disease, including getting neurological diseases, such as Huntington’s disease or Alzheimer’s disease. Although the advances in health technology have allowed people to better understand their risk for certain conditions and diseases, this information could be used adversely if it falls into the wrong hands.

For example, what if an insurance company could discriminate if they knew a person was at a greater risk for arrhythmia, stroke, or heart attack? What if an employer could fire an employee if it discovered that person was genetically predisposed to developing dementia in the next 10 years? What if an employee did not know his or her employer had access to this genetic information?

Sadly, cases of genetic discrimination are already happening. In 2012 in Palo Alto, Calif., Colman Chadam was asked to transfer middle schools because he was a carrier of cystic fibrosis (CF), even though he was unaffected by the disease. Two children with CF were already attending the school, and because individuals with CF should avoid contact with others who have the disease due to cross infection, their parents petitioned the school district for Chadam to be transferred. Chadam’s parents filed a genetic discrimination lawsuit so he could attend the school.

In 2012, employees of Atlas Logistics Group Retail Services in Atlanta were asked to submit to a cheek swab in an attempt to identify who had been vandalizing one of its warehouses. Two employees recognized the dangers of submitting their personal genetic information and learned that they shouldn’t have to under the Genetic Information Nondiscrimination Act (GINA). GINA makes it illegal to discriminate against employees or applicants because of genetic information. GINA also states that it is “an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee.”

How can we avoid potentially dangerous situations involving our own DNA? It is up to individuals to be informed and do their research on the companies that store and use their data.

So before sending in a saliva sample or DNA data, be sure the company you’re sending it to will strip all information of personal identifiers. Make sure any company that you send data to understands the importance of privacy and will keep your data secure. Understanding how companies plan to use your data not only allows you to maintain control but also helps you avoid situations where your personal information ends up in the wrong hands. Read the privacy and terms of use policies when your personal data is involved.

The control of data privacy is all about being able to decide who can access your data, under the conditions and for the purposes that resonate with you,” says Scott Kahn, Chief Information Officer at LunaPBC. “Isn’t this a better model of control than having institutions make these decisions for you?”

LunaDNA takes your privacy seriously. All personal information is removed and de-identified from any health or DNA data that is given to LunaDNA. Personal information is stored on a separate database from the health data so that there is no connection. All data is securely encrypted to protect your privacy. Finally, you are in control of your data, and it never leaves the LunaDNA platform. Researchers can only access the de-identified data on the platform and cannot export the information. You can choose to access or delete your information at any time.

Discoveries depend on research which relies on data. We think data use should permissioned by you. Contributing to science by sharing health and genetic information will allow researchers to perform important studies that are needed for medical breakthroughs. During this exciting time, remember that while sharing DNA data is absolutely vital to advancing the field, it is equally important that you share it safely.

Luna is bringing together individuals, communities, and researchers to better understand life. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.  

Directly drive health discovery by joining the Tell Us About You study. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


LunaDNA-World-Economic-Forum-Tech-Pioneer

LunaPBC Named 2019 World Economic Forum’s Tech Pioneer


We’re thrilled to announce that the World Economic Forum (WEF) today named LunaPBC™, the public benefit corporation behind LunaDNA™, one of its newest Technology Pioneers — ahead of hundreds of up-and-coming tech companies, worldwide. This designation globally recognizes LunaPBC as a startup breaking health data barriers towards the goal of accelerating health discovery through people-powered research.

Medical breakthroughs and improving quality of life depend on comprehensive, continuous, real-world health data organized to support medical discovery. People are the best curators of their health data, and we need them as partners in research,” said Dawn Barry, president and co-founder, LunaPBC. “This model brings together social responsibility with technology for real-world, frictionless, passive information capture. We can imagine research as a continuous relationship versus a moment in time transaction.”

WEF was established in 1971 as an International Organization for Public-Private Cooperation, engaging the foremost political, business and other leaders of society to shape global, regional and industry agendas.

Since 2000, WEF established the Technology Pioneer community to recognize early to growth-stage companies from around the world that are making waves in the design, development, and deployment of new technologies and innovations, and are positioned to have a significant impact on the world. With this designation, LunaPBC joins acclaimed Technology Pioneers, including Wikimedia, Twitter, Spotify, Google and AirBnB.

LunaPBC is now immersed into WEF’s events and initiatives, where we’ll be at the center of cutting-edge insights and novel perspective in world-changing discussions. From July 1 to July 3, Bob Kain will be in Dalain, China, participating in the WEF Annual Meeting of the New Champions. There, he’ll be discussing the impact of ground-breaking genetics and molecular science related to human longevity in a session entitled, “What If: You Could Live to 150?”. Select awardees will also attend the January 2020 Annual Meeting in Davos, Switzerland to continue contributing to WEF initiatives over the next two years.

LunaDNA-World-Economic-Forum-Tech-Pioneer
LunaPBC team from left to right: James White, Thomas Rodriguez, Debora Thompson, Kirby Bloom, David Lewis, Dawn Barry, Bob Kain, Scott Kahn, Alexandria Leonidova, Bojil Velinov, Mayank Tyagi, Genevieve Lopez
Bob Kain
Bob Kain, CEO + Co-founder at LunaPBC

This exciting news comes just one month after our funding announcement from top tier venture capitalists, including ARCH Venture Partners, Bain Capital Ventures, F-Prime Capital, Illumina Ventures, and Osage University Partners. A few months before, we proudly announced our strategic partnership with Genetic Alliance, the world’s leading nonprofit health advocacy group committed to transforming health research for individuals and communities.

We’re only halfway through  the year and together we’re already paving global paths in health research. WEF’s Technology Pioneer 2019 award is a reminder of the strides we’re making as a community directly contributing to health discovery. Thank you for being a part of this journey with us at LunaDNA.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Your Health Data, Our Principles: How To Feel Confident Sharing Your Health Data For Research


LunDNA was established by the public benefit corporation, LunaPBC with one powerful purpose — to put people at the center of health research.

By doing so, we ensure the fairness of value distribution amongst all research participants, the advancement of science and health discovery, and the acceleration of treatments and cures to diseases.

The first ever people-powered health data platform owned by its community of health data contributors now exists in today’s data-driven, high-tech world, but not without strict values and principles that power its mission.

Because we believe people are at the core of driving health discoveries, we have taken considerable measures to define the relationship between individuals contributing data, companies obtaining data, and researchers utilizing data.

The following four concepts are ones we encourage you to understand before sharing your personal data to research.

1. Transparency

Where is your data, who is using it, and how is it being used at all times?

Transparency is open, honest communication, which lends itself to accountability and responsibility to the individual from the company or researcher. It promotes a culture of authenticity, cooperation, and trust which is essential when sharing your most personal information.

Transparency can take many forms, from a company displaying concise, easy-to-understand policies, to regular company updates or newsletters. Transparency can also be as simple as resources on their site for an individual to find out additional information at their convenience.

Be sure to stay clear from companies who “sell” your data to third parties.

“Third parties” is a catch-all phrase for any other company not legally affiliated with the company with whom you shared your data. Once your data is sold, you lose control of your data.

2. Control

Who really owns your data once it’s been shared? Can you access or delete your data from any platform at any given time?

Contrary to popular belief, control of your personal data is not a luxury, but rather should be an essential part of your regular data transactions. When sharing your health data to research, control can be perceived as a string tied from one end (company) to the other end (you). The string can never be split or broken, as only one copy is on the platform. Your data is never duplicated nor does it ever leave the platform. Only you can quickly and easily access your data, delete some or all of your data, and provide consent as to when it is used for research.

Control over your data is the ease of accessibility to your data on any given platform, provided with clearly-written policies surrounding your decision to upload or delete your data, including how long each process takes.

Be cautious of companies that require you to submit written requests to delete your data, download processes that are not “push-button” on the company’s website, policies that contradict best practices, or any misleading information regarding the control of your data.

3. Privacy and Security

Is your identity protected from data breaches and is its security the utmost priority?

There’s no escaping the abundant news of data breaches, cyberattacks, and government surveillance that bombard our screens every day. It’s no wonder why it’s difficult to identify what companies are prioritizing the security of your most personal information.

In truth, most companies are conducting at least the minimum amount of safeguarding of your information, but very few make it a top priority.

A long-standing regulation in the United States, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) set national standards for protecting “individually identifiable health information by three types of covered entities”.

For simplicity sake, let’s break it down.

First, “individually identifiable information” is defined as pieces of information that could be used individually or in minimal combinations to re-identify you. This includes your name, your address, email address, birth date, personal phone numbers, fingerprints, and much more. To be “HIPAA compliant” a company must ensure this type of information is not accessible by anyone but the individual and authorized individuals, such as your doctor or caregiver. For instance, if you share a lab test result report for research, before it can be used for research, it must be stripped of your name, the date of the test, your address and other types of information that might be on the report that could identify you.

Second, “covered entities” is specifically defined to cover healthcare providers and other similar groups. It does not typically apply to companies performing research with your health data. The European Union (EU) has recently enacted farther reaching regulations on data privacy and security under the EU General Data Protection Regulation (GDPR) and is seen as fundamentally changing the way data is handled. Other countries are exploring similar regulations, and global companies are, in many cases, struggling to catch up to the new gold standard.

Meanwhile, companies are also focused on securing their technology platforms, whether that is a simple website or a much more extensive platform. Related buzzwords you may be familiar with include encryption, firewall, hash, private keys, etc.

Since security practices and cyberattack techniques are constantly evolving, companies need to prioritize security, ensuring they remain up-to-date with best practices and well-protected against any digital threats.

This doesn’t fully guarantee that a breach won’t happen, but extra precaution will dramatically reduce the likelihood. Often, companies aren’t able to share their security practices in detail, as that provides valuable information for a hacker to use, but there are other ways to understand the importance of security from a particular company.

Prioritized privacy and security will take the form of clear privacy and terms of use policies, two-factor authentication and other account security options, HIPAA compliance, GDPR compliance, security testing certifications, safeguards to prevent re-linking individually identifiable information to other data, and education for team members focused on privacy and security.

Look out for companies who have poorly described privacy policies, lack proper methods of authentication and account verification, and have ambiguous security statements, like “bank-level security”.

4. Shared Value

Who benefits from your data — you, the company, or the world?

Some companies today offer you certain services in return for your data, while most companies ask you to give or sell your data for research. Once your data is exchanged with these types of companies, you are no longer aware of its use, the purpose of its use, or any value gained from its use. Additionally, any health discovery that derives from the use of your data is rarely communicated to you.

The goal of any company driving health discovery should be to serve the greater good, including treating you fairly and ethically for your personal health data. Valuing those who made it possible to discover vital treatments and cures to conditions and diseases – to put simply – is the right thing to do.

Be cautious of monetary returns with uncertain value, including crypto or reward points, or no share valued offered where you are disintermediated from the income made from your health data.

Today we live our lives bouncing to and from the digital world and physical world. Understanding the rules of each environment, especially when it applies to your most personal and valuable information, is crucial in living a secure lifestyle. Educating yourself on your rights and the regulations of your health data can help hold companies accountable for their actions and allow you to feel confident in sharing your health data for research.

Luna is bringing together individuals, communities, and researchers to better understand life. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.  

Directly drive health discovery by joining the Tell Us About You study. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.