We’ve been hearing about patient-centered research for years. Yet while those of us in the industry have long been immersed in creating participant-centered research, the concept is still not mainstream. But that might be changing.
The challenges of the pandemic have propelled us to develop incredible advances in technology and clinical research. It has highlighted the importance of health data that reflects one’s lived experience. In addition, we’ve learned that we have to move quickly to adapt to these challenges.
A Wave of Digital Clinical Trials
A recent survey conducted by Informa Pharma Intelligence found that 76 percent of professionals involved in clinical trials are now conducting digital, remote studies due to the pandemic.
The most common steps researchers took? The adoption of patient-facing technologies, such as the use of wearables and mobile devices for data collection.
Trust and Transparency in Digital Health
In response to these creative solutions, we’re increasingly seeing both those in the industry and everyday people wanting transparency, trust, control, and privacy when it comes to individual health data. Study participants and researchers are asking questions and demanding that personal data be secure and controlled not by companies, but by the individual.
Even before the pandemic, patients have been concerned about their data. In June 2019, the Clinical Trials Transformation Initiative published a report about patient preferences on the use of mobile technologies in clinical research. Among the findings were that 80 percent of participants said it was important to have access to the information collected about them from the mobile technology used in a study. Respondents who were concerned about the security of their health data were, not surprisingly, less likely to join a mobile clinical trial. We believe that number would be even higher today.
All are Welcome to a Seat at the Table
From its start, Luna has been committed to safely and securely using health data to accelerate understanding and fuel insights to provide better health for individuals and families. We do this by transparently bringing together researchers, patient advocacy organizations, individual participants, and industry partners to answer important research questions.
Our latest partnership helps families affected by mucopolysaccharidois type II (MPS II), an inherited disorder also known as Hunter syndrome. To make a difference in accelerating research into this rare genetic disease. families are joining the study, which is designed to reflect their needs, wants, and lifestyles.
Research doesn’t have to be a zero-sum game. We are now seeing a real acceleration of research efforts in which everyone has a seat at the table. What we’ve built at Luna can deliver better, faster, and more cost-effective research. We are amplifying the science by amplifying the opportunity for individuals. This is participant-centered research.
Digital Health Prediction for 2022
Two years of adapting to the pandemic have created opportunities for us to embrace the best of what technology has to offer and apply it to clinical research and the advancement of health.
For 2022, Luna will bring into the mainstream the guiding principles that helped establish the organization in 2017:
- We’ll bring participant-centered research into the mainstream, where individuals have a seat at the table and a voice in the research. They’ll control their health data. It’s secure. It’s private. It can be used for many studies that are important to them (not just collected for one research question).
- We’ll continue to apply the best technology we have in our consumer world and apply it to health science, clinical research, genetic disorders, and rare diseases.
- We’ll bring greater focus on more cost-efficient, faster, and better research.
- We’ll unite industry and advocacy to help them accelerate and execute participant-centered research.
This all will fuel partnerships, research, and ultimately insights to provide better health for families and individuals.
Who’s ready to get started?
To learn how Luna can help your organization bring together individuals, communities and researchers to produce powerful insights, contact us at collaborations@lunadna.com.
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.
PRESIDENT + CO-FOUNDER
Dawn is the president and co-founder of Luna. She is the former VP of Applied Genomics at Illumina and, for 12 years, built pioneering teams from health screening to nutritional security.