Blood Donations Provide Lifesaving Treatments and Potential Research Opportunities


An ongoing partnership answers the call of blood donors by providing new clinical research opportunities. After the success of community-focused studies to develop COVID-19 vaccines and treatments, blood donors asked what more they could do as research participants to improve the health of their community.

Through an ongoing collaboration between San Diego Blood Bank and LunaPBC, blood donors are able to support health research along with providing a lifesaving donation.

“When we began collecting convalescent plasma for COVID-19 hospital patients at the height of the pandemic, donors who recovered from the virus came out in droves to donate to help those in their community and beyond,” said Nikhil Nayak, Chief Business Officer for San Diego Blood Bank. “Our blood donors often ask about additional ways they can support our mission, so we are proud to afford them the opportunity to influence the future of personalized medicine through innovative programs like this.”

San Diego Blood Bank is a platform for ensuring the community’s health by connecting its resources and diverse blood donors with research opportunities. Luna was the optimal partner because of its people-centered framework that increases participant engagement and retention, ensures interventions meet the priorities and needs of individuals, and facilitates comprehensive, longitudinal studies.

Read San Diego Blood Bank and LunaPBC Provide Blood Donors an Opportunity to Contribute to Health Research.

“Factors such as genetics, age, gender, and ethnic origin play an important role in the effectiveness of medical treatments, which is why diversity in research participants is incredibly important,” said Nayak.

Dedicated blood donor Jeff Gonka said, “One standard blood donation could save up to three lives, but one small blood sample donated for research could potentially save thousands of lives.”

Do you live in or visit the San Diego area often? Join the San Diego Research Community on Luna today.


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.


Reflections for 2023


In 2022, Luna prioritized quality research, privacy, and community. We launched a number of studies with partner organizations, established Community Driven Innovation™, and shared our thoughts on the changing dynamics surrounding health privacy. Looking ahead, Luna reflects on the previous year to predict the important trends of 2023.

Privacy and Trust Concerns Grow in Research

Dawn Barry

Dawn Barry, Luna president and founder

Unfortunately, the health space has lost ground in consumer trust, with growing criticism in areas like pandemic response, mRNA vaccines, data surveillance and selling, and cyber breaches involving medical information. This lack of trust could further hinder people’s involvement with research, especially as the industry looks to incorporate digitalization — through real-world data, decentralized clinical trials and wearables — into next-generation trial designs. To move forward, we need to get back to basics on human trust. We need to be transparent, consistent, clear in our communications, inclusive and ethical. In other words, we need to do what’s right.

Acknowledging that individuals should control the research use of their data is only a starting point. Embracing modern data privacy laws like GDPR and CCPA is another meaningful step in demonstrating respect for study participants.

Labor-Shortage Crisis in Health Care

Joe Beery, Luna chief executive officer

The healthcare worker shortage is a significant worldwide concern, and what’s also embedded in this challenge is that many of our most experienced doctors also operate as lead researchers for new medicines and therapies. We need to ensure the funnel for vital research that feeds innovation is protected and that this population of professionals is well taken care of.

Participant-Reported Research

Ian Terry

Ian Terry, Luna senior user experience researcher

Measuring patient-reported outcomes is key to ensuring medical interventions meet the needs of the people they aim to serve. But what about patient-reported goals, lived experiences and quality-of-life desires? In 2023, I want to see more research that starts with and fully integrates the patients’ goals and measures how those outcomes were met. In establishing a full continuum that’s centered on what patients need and want, the patients win because they ideally get something that improves their life — not something industry thought they needed — and researchers and industry establish more clinically relevant outcomes to meet, thereby de-risking their development efforts.

Measuring patient-reported outcomes is key to ensuring medical interventions meet the needs of the people they aim to serve.

Balancing Life, Research, and Work

Debora Thompson

Deb Thompson, Luna vice president of operations

COVID-19 spurred the necessity of virtual work on a scale not seen before. It changed people’s perspectives on work-life balance. On the positive side, the flexibility of being able to interweave work with life means fewer missed opportunities to spend time with family, exercise, and take a breath when needed. On the negative side, missed interaction with fellow employees means more missed opportunities to brainstorm, forge bonds and connect. As always, a balance is needed to garner the best of both worlds. Why, then, do we not require the same balance with research? Tests, measurements, and doctor-patient interactions are extremely valuable to research; however, they are only one side of the story. “Real-world evidence” and “real-world data” are not things that can be fully captured in a doctor’s office or clinical site that people are forced to travel to — increasing their stress, anxiety, and other negative symptoms. What are the real lived experiences, symptoms, and behaviors of people in their normal environment? Scientists and doctors must be willing to listen to the experiences of the patients themselves; they must be willing to include data captured from patients in their normal environments. Real “real-world data” is not the electronic health record; it is the voices of the people who live with a condition. We must have REAL #LifeResearchBalance.

Protecting Privacy

Scott Kahn

Scott Kahn, PhD, Luna chief information and privacy officer

De-identification of personal data has become a myth. We live in an age of re-identification because of the proliferation of data that can be collected on individuals and the power of artificial intelligence. De-identified DNA data is an oxymoron. The world must fully embrace a rights-based approach to data control that seeks targeted informed consent for personal data use. This approach is used with the EU’s GDPR, other countries and is now expanding state-by-state across the U.S.


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.


Privacy-Preserving Technologies and Rights-Based Privacy Regulation Compliance


There has been increased interest over the past decade over what to do with the growing volume of digital information collected on individuals that are potentially used or sold by companies and governments. This interest is even more heightened when health data is involved and how this data might be used in ways contrary to the interests or values of individuals. In parallel, new data protection laws have passed in many parts of the world and increasingly in several states within the United States that express the control of data privacy as a human right.

It is commonplace to merge the concepts of data privacy and security, even though each has a unique role. Data security is the step taken to prevent unauthorized access to data. A common security approach involves data encryption that requires user-specific information to decrypt the data back to its original form. Privacy-preserving technologies, or PPTs, are a newer class of technologies that support the distribution of encrypted data that can be selectively decrypted to reveal some or all of the data that is encapsulated. PPTs are especially exciting for the sharing of genomic data so that only some of the data is made available to a researcher, which presents a lower risk to the individual for subsequent data misuse.

A common data privacy policy is the right to rescind one’s consent and to have the individual’s data deleted, also known as the “right to be forgotten.”

Data privacy, in contrast to data security measures, is a set of policies that are applied to secure data. These policies typically govern the data collected, the purpose for which the data is collected, and the informed consent granted to the researcher to study the data. A common data privacy policy is the right to rescind one’s consent and to have the individual’s data deleted. This is also known as the “right to be forgotten.”

Security-based protections such as PPTs and privacy-based protections are very different in how they are implemented. With security-based approaches, data are distributed to researchers that are approved to access the data. Once access is granted, the control of the data is lost. Over time there can be many copies of the data that have been granted to multiple researchers, as shown in Figure 1A.

Figure 1A. Once permission is granted data is distributed to uncontrolled environment(s)

In contrast, privacy-based approaches maintain control of each piece of data within an environment that supports the removal of the data if an individual’s consent is withdrawn. Under the privacy-based approach, an individual has a virtual string on their data that supports the pulling back of their data at any time, as shown in Figure 1B.

Figure 1B. Use of permissive data is used within an environment that enforces privacy policies.

The question of which approach is better rests largely on the regulatory environment in which the research is being performed. In Europe, compliance with the General Data Protection Regulation, or GDPR, requires that the data rights of individuals persist when they share their sensitive personal data, such as health data. In states such as California, the California Privacy Rights Act (CPRA) that has come into law in 2023 requires similar protections for individuals. For historic datasets, databases, and biobanks that include genomic data, the use of PPTs has provided a more secure way to distribute such sensitive personal data.


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.


Something Exciting Happened on October 6, 2022, Concerning Your Medical Records


Editor’s note: This article is jointly authored by Luna and Greenlight Health Data Solutions.

The Information Blocking Rule, now in effect, is a new federal regulation we should all celebrate as a big win for control over our health information, a right that we should always have had.

Let’s take a step back in time and then fast forward to today. In recognition of the importance of digital health information for advancing precision medicine, the Information Blocking Rule was a provision of the 21st Century Cures Act which aimed to modernize healthcare data interoperability and update a component of HIPAA that was oriented to paper-based medical records, not Electronic Health Records (EHRs). Part of the motivation to connect EHRs was to improve the portability of one’s health data to multiple healthcare providers and to give direct access to one’s health data using online patient portals. The Information Blocking Rule requires that all healthcare organizations give patients access to their full health records digitally (via a patient portal)–without delays or cost.

Why is this important? The new Information Blocking Rule unblocks access to Electronic Health Information (EHI), which Health and Human Services (HHS) defines as electronically Protected Health Information, or PHI. The significance of this rule has many threads–not least of which is bringing control and rights to the information much closer to the patient–the individual who the data is about, you! You can now review and research your own information to be a more informed patient. You can easily share your data with new healthcare providers if you relocate or change your insurance coverage. You can avoid time-consuming and costly duplication of diagnostic tests, which is commonplace whenever one engages with a new medical professional. You can also choose to share your data with a clinical research study or trial that is of interest to you to advance medical knowledge and health discoveries for society more broadly.

We’ve been advocates for individuals’ rights to access their health information for a long time. Greenlight Health was an early software platform specifically designed to offer patients online access to their health data. Luna has implemented Greenlight’s EHI data-sharing APIs which support connections to more than 90% of the U.S. provider market. This approach allows for the inclusion of EHR data, along with genomic and health survey data, for patient-centered research studies to understand and improve health outcomes. Gathering health information from multiple health systems, and across decades, provides convenience to individuals and their families while simultaneously providing a richness of data to researchers to unlock new insights for health improvements. Such patient-centered studies hold promise to enrich the standard of care more equally for individuals of all ethnic and racial backgrounds.

An essential aspect of inclusive clinical study participation requires that data shared by individuals is done with their informed consent and that the data is not used for other purposes outside the individual’s consent. Luna’s health data sharing and analysis platform uses rights-based data privacy measures to protect access to shared data so that a contributor (you) can remove their data from the platform and/or from any studies they joined with a simple click of a button. By implementing rigorous rights-based data protection and privacy that complies with all current privacy laws (such as GDPR in the EU), Luna provides a path to international clinical studies that can benefit from population diversity globally.

It’s no longer in the medical provider’s control to decide when to release a patient’s information. The Information Blocking Rule is really about information sharing and empowering the patient with ownership of their health data. Under HIPAA, healthcare providers are allowed 30 days to fulfill medical record requests; 60 days is permitted if the provider needs an extension. With this new rule and direct EHI access methods for patients, a healthcare provider cannot “interfere” with the flow of EHI, and it needs to flow without delay. When there are instances of interference, healthcare providers and EHR vendors are subject to financial penalties (up to $1 million per occurrence and/or reductions in Medicare and Medicaid reimbursement). Healthcare providers and vendors lobbied strongly against this rule being passed (in fact, the rule was held up for six years). Days before the rule became effective, 10 of the leading healthcare industry trade associations pushed HHS for a delay. As stated, the rule extends an individual’s right to access EHI through a patient portal. As the name implies, patient portals were designed to support functionality that allows individuals to connect to their medical records whenever needed. The intent of having immediate access to medical records through a patient portal is to provide a mechanism for sharing EHI with other healthcare providers, with family members, and for research.  

It’s no longer in the medical provider’s control to decide when to release a patient’s information.

This rule is one more step toward providing you with a comprehensive understanding of and access to your own healthcare information and, more importantly, control of how your health records are shared.

Taking the power of your health records to the next level, Greenlight Health and Luna combine capabilities to enable you to consolidate your records in one place and safely share your health records and other unique experiences in research studies that are of interest to you. You are in the driver’s seat now. The steps you take next could make a big difference in finding treatments and cures for those who need them most.


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.


Expanding the Conversation Around PCOS with Participant-Led Research


Affecting more than 115 million women globally, polycystic ovary syndrome (PCOS) is not considered a rare disorder. However, it’s often underdiagnosed, under-researched, and under-discussed. Diagnosis usually comes after other disorders have been ruled out, a process that often takes two years or more for women. 

To advance understanding and support for people with the disorder, PCOS Challenge: The National Polycystic Ovary Syndrome Association partnered with Luna to raise the collective voice of those affected and drive patient-focused research. 

“One of our key goals is to unite the major PCOS stakeholders in the largest organized effort to address gaps in care and to find a cure for PCOS,” says William Patterson, founding Executive Board member and current Director of Public Affairs at PCOS Challenge. 

PCOS Challenge has had a long history of elevating those affected by PCOS as partners in research. “Many investigators miss a huge opportunity by not fully engaging patients as true partners in research and discovery. There is a tendency to design studies with little-to-no meaningful patient involvement and to seek a rubber stamp from patients,” he says. 

“We see the frequent misalignment between government, clinical, and patient research priorities which often stem from not listening to patients from the earliest stages of research and its impact on treatment, care, and counseling,” Patterson says. “We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.”

Many problems exist regarding access to care and quality of care for those with PCOS, stemming from a lack of focus on health policy, underfunding of research, and the type of research being funded, he said. 

We see this as an important means of leveraging patient insights, priorities, lived experiences, and skills to fill gaps in the literature, disrupt outdated narratives negatively impacting patient care, and accelerate discovery.

William Patterson

“Historically, the National Institute of Child Health and Human Development (NICHD) funded about 70% of PCOS research. While the NICHD has done tremendous work and contributed greatly to our understanding of PCOS, its mission is largely limited to human development and reproductive health. When you have only one institute funding a majority of PCOS research, it ultimately creates a skew in the literature.  In this case, the skew is largely toward the reproductive aspects of PCOS,” he says. 

This equates to PCOS being viewed as a reproductive disorder, not a lifelong debilitating condition that comes with other co-morbidities, including mental health, metabolic, cardiovascular, endometrial cancer, liver disease, and other health risks.

“Through our awareness and advocacy efforts, we’ve expanded the conversation around PCOS, so patients and health professionals are more aware of the co-morbidities associated with the disorder and the impact of PCOS on people throughout their lifespan.”

This is why a patient registry is critical, says Patterson.

Propeling discoveries for PCOS research

Two studies have already been launched: the PCOS Challenge Economic Burden Study, which examines the intangible and indirect costs of having PCOS, including quality of life and work productivity, and the PCOS Pregnancy and Maternal Health Study, which aims to identify the gaps in education about pregnancy, and maternal and child health to improve awareness and counseling. 

The medical literature suggests women with PCOS are at greater risk of experiencing maternal health complications, like preeclampsia, pregnancy-induced hypertension, and pre-term delivery. These two studies will help provide a clearer estimate of the economic burden and true costs of having PCOS in terms of quality of life and work productivity and help close gaps in awareness, education, and counseling related to pregnancy and maternal and child health risks for those affected by PCOS.

“We see the Luna platform and our patient-powered registry as a means to focus on the questions that patients want to be answered,” Patterson said.

Patient-led research provides mentoring opportunities for investigators

PCOS Challenge is working strategically to reach as many individuals as possible and to empower multiple stakeholders through its patient-powered registry, The PCOS Challenge Study. One of the advantages of the PCOS Challenge partnership with Luna is that it helps the organization achieve one of its goals: getting more early-career scientists involved in PCOS research. 

“We see a lack of mentoring and development opportunities for early-stage PCOS investigators,” he says. “In connection with the PCOS registry, we are creating an early-career forum to help these emerging investigators receive mentoring opportunities from senior investigators in the field where we have relationships.” 

As an extension of the organization’s mission, the studies also help PCOS Challenge shape the future of medicine by promoting a unified, international research agenda that includes patients and scientists contributing to understanding PCOS and supporting individuals who live with the condition.


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.