November 2023 - Lynx.MD

Do Good With Data: Responsible Data Sharing

In my role as VP of marketing at Lynx.MD I recently interviewed a partner about why they believe that securely sharing clinical data is the future to better healthcare for all. For the client and their peers, it came down to a very simple principle: “Do Good WIth Data.” Embrace safe, secure, and responsible data sharing to transform healthcare for patients and providers.

Unlocking Insights for Advancements:

The seamless integration of structured and unstructured datasets, coupled with advanced AI and NLP technologies, enables us to extract meaningful insights that were once elusive. According to the NIH, the responsible sharing of healthcare data has accelerated the pace of research, leading to groundbreaking discoveries and advancements.

Fostering Inclusivity Through Data Sharing:

Responsible data sharing in healthcare can empower researchers with a wider range of data to identify and address health disparities, leading to more effective interventions and improved health outcomes for underserved communities. By fostering a collaborative approach to data collection and analysis, healthcare providers can gain a deeper understanding of the unique needs of diverse populations and develop personalized treatment plans that promote inclusivity and equitable access to quality care.

Collaboration Across the Healthcare Ecosystem:

Our partnerships with the entire healthcare ecosystem, including providers, researchers in life science, biopharma, and medtech, exemplify the collaborative spirit that responsible data sharing fosters. Collaborations have not only streamlined operational efficiencies but also facilitated cross-disciplinary approaches to complex healthcare challenges.

Balancing Security and Innovation:

Ensuring the security and privacy of healthcare data is paramount. Striking a delicate balance between safeguarding sensitive information and fostering innovation is a challenge that the industry continues to address. Robust encryption protocols, data anonymization techniques, and stringent access controls are integral components of responsible data-sharing practices. We can not underscore enough the importance of these measures in safeguarding patient confidentiality.

Ethics in Data Utilization:

Responsible data sharing goes hand in hand with ethical considerations. Upholding ethical standards in the utilization of healthcare data is not just a legal obligation but a moral imperative. Researchers, providers, and industry stakeholders must adhere to stringent ethical guidelines to ensure that data usage aligns with patient welfare, organizational values, and societal values.

The Impact on Operational Efficiencies:

Beyond research, the ripple effects of responsible data sharing are felt in operational efficiencies across the healthcare spectrum. Real-time data analytics and predictive modeling, empowered by AI and ML, play a pivotal role in optimizing resource allocation, curbing costs, and elevating patient outcomes. Healthcare organizations are now realizing the transformative impact of AI and ML, recognizing their role in driving data-driven operational enhancements for sustained success.

Do Good With Data

It was an “AHA moment” when the client shared their “Do Good With Data” mantra that so succinctly underscores the transformative potential of responsible data sharing in healthcare. It is a guiding principle that propels healthcare research and operational efficiencies forward. As the custodians of vast datasets, we must remain steadfast in our commitment to responsible data sharing, ensuring that its benefits are harnessed for the greater good of all stakeholders in the healthcare ecosystem.

Learn More

Digital Natives: Comfortable Sharing Clinical Data for Research and Development

The digital native generation, millennials and beyond, is the first generation to grow up with the internet and digital technology in the palm of their hand. They are comfortable using technology to communicate, learn, and access information. This comfort with technology extends to the healthcare sphere.

A 2023 study published in the journal Nature Medicinefound that digital natives are more likely than older generations to be comfortable sharing their clinical data for research and development. The study found that 62% of digital natives were willing to share their data, compared to only 38% of non-digital natives.

There are a few reasons why digital natives are more comfortable sharing their clinical data. First, they are more likely to trust technology companies and healthcare organizations. Second, they are more likely to understand the benefits of sharing their data for research and development. Third, they are more likely to believe that their data will be used responsibly.

The Benefits of Sharing Clinical Data

Sharing clinical data for research and development can have several benefits. For example, it can help researchers develop new treatments and cures for diseases. It can also help researchers to better understand how diseases work and how to prevent them.

In addition, sharing clinical data can help to improve the quality of healthcare. For example, researchers can use clinical data to develop new diagnostic tools and to identify patients who are at risk of developing certain diseases.

How Digital Natives Are Sharing Their Clinical Data

Digital natives are embracing their role as active participants in the healthcare data revolution, eagerly sharing their clinical information through various digital channels. A prime example is their adoption of health apps, websites and wearables that enable them to monitor and track their health data, actively sharing it with researchers to advance medical understanding. Additionally, they elect to engage in clinical trials that leverage digital technology to collect and share data, contributing to the development of innovative treatments and therapies.

Digital natives are also more receptive to the passive sharing of their data, particularly when they are assured that it will be de-identified and randomized before being utilized for research purposes. This includes the aggregation of their data for research into various healthcare domains, encompassing holistic health and traditional health disciplines. By actively and passively sharing their clinical data, digital natives are playing a pivotal role in shaping the future of healthcare research and innovation.

Ensure that Clinical Data is Shared Responsibly

It is important to ensure that clinical data is shared responsibly. This means that healthcare organizations and technology companies should have clear policies in place to protect the privacy and security of the data. And, PHI should never be shared without the express written consent of the patient.

In addition, it is important to give patients control over their data. Patients should be able to choose whether or not to share their data and who they share it with. Most healthcare organizations that participate in academic and third-party research already have patients acknowledge and agree to this kind of passive research participation. To ensure the individual maintains control, healthcare organizations should provide a very easy-to-understand Opt-In / Opt-Out option when people are making appointments or otherwise engaging in care.

The Future of Clinical Data Sharing

As the digital native generation becomes the primary users of healthcare service, as that population exceeds boomers and earlier generations, we can expect to see more and more people sharing their clinical data for research and development. This will lead to a number of benefits, including the development of new treatments and cures for diseases, improved quality of healthcare, and a better understanding of how diseases work and how to prevent them.

HealthTech’s Responsibility

Digital natives are comfortable sharing their clinical data for research and development as long as it is for the greater good. There are a number of benefits to sharing clinical data, including the development of new treatments and cures for diseases, improved quality of healthcare, and a better understanding of how diseases work and how to prevent them.

It is important to ensure that clinical data is shared responsibly. This means that healthcare organizations and technology companies should have clear policies in place to protect the privacy and security of the data. In addition, it is important to give patients control over their data.

As digital natives come of age and become the primary users of healthcare services, we can expect to see more and more people sharing their clinical data for research and development. This will lead to benefits for everyone.

Here are some additional thoughts on how to make clinical data sharing more comfortable for digital natives:

Transparency: Digital natives want to know how their data will be used and who will have access to it. Healthcare organizations and technology companies should be transparent about their data-sharing practices.
Control: Digital natives want to have control over their data. They should be able to choose whether or not to share their data, even if it is in the form of a generic Opt-in / Opt-Out consent acknowledgment with their provider organization.
Benefit: Digital natives want to know that their data is being used for a good cause. Healthcare organizations and technology companies should explain how sharing data will benefit patients and the public.

By following these guidelines, healthcare organizations and technology companies can make clinical data sharing more comfortable for digital natives and reap the benefits of this data for research and development.

Healthcare Providers, MedTech, and Life Science companies can learn more about how Lynx.MD is helping organizations securely optimize the knowledge to be found in real-world clinical data.

Learn More

Solve for Privacy to Bring the Big Data Revolution to Healthcare Research

Industry Brief

November 2023

Download

Balancing Data Utility and Patient Privacy in Healthcare Research

The healthcare industry generates vast amounts of data, yet leveraging it effectively while safeguarding patient privacy remains a challenge. New data-driven technologies promise to make healthcare processes more efficient and more scalable, while also unlocking new treatments and medical technologies to improve patient care.

The Data Privacy Dilemma

Healthcare organizations often face a tradeoff between maximizing data utility and ensuring patient privacy. Restricting data access limits innovation, while unfettered access risks data breaches. The key is to find a way to provide access to real medical data in a streamlined and scalable manner without compromising privacy or security.

Secure Data Ecosystems

New technologies are emerging to address the challenge of data privacy in healthcare research. These technologies provide secure access to data while maintaining control over sensitive information. They enable researchers to analyze data without directly accessing it or removing it from its secure environment.

Gradated Access for Controlled Data Sharing

Graded access models allow healthcare organizations to share data with researchers while maintaining control over who can access what data. This ensures that sensitive information is only shared with authorized individuals and for approved purposes.

Preserving Privacy with De-Identification and Differential Privacy

De-identification techniques and differential privacy can be used to anonymize data and prevent re-identification. Differential privacy adds noise to aggregate data, ensuring that individual patient information cannot be inferred.

Unlocking the Power of Data

By balancing data utility and patient privacy, healthcare organizations can unlock the power of their clinical data to improve patient care and advance healthcare research. These new technologies and techniques are paving the way for a new era of data-driven healthcare innovation.

Learn More

At Lynx, we are committed to ensuring the highest level of security and privacy for patient data, while still making it accessible for valuable research insights. Our innovative processes and protocols provide the means to advance medical knowledge without compromising sensitive data.

To delve deeper into our revolutionary approach, download the full white paper.

Download