Why Patient Advocacy Organizations Should Be the Leaders of Clinical Research

February 21, 2023

Contributor: Anne Kim

Data is the key to cures.

That holds true whether we’re sharing existing successes in patient care or fueling hypotheses for new breakthroughs.

Patient advocacy organizations (PAOs) and non-profit health organizations are constantly innovating to find new cures, which makes clinical data a core part of their everyday mission. Unfortunately, most patient data is currently sourced from the same sites — limiting these groups’ opportunity to fuel new discoveries for their patients.

Organizations that can bring together datasets from a wider, more representative pool of patient data will gain more insights and attract mission-aligned funding — especially if they’re focused on rare subtypes. It’s their duty to maximize the impact of patient data in an ethical way.

Historically, achieving this goal has only been possible with multi-million dollar investments to build ad-hoc data registries. Not every org has such deep pockets — but that doesn’t mean they can’t make an impact.

In order to fulfill their duty, organizations must make strategic investments and implement innovative strategies to source patient data in a more ethical, equitable and secure way. Implementing a data strategy that achieves this goal will:

  • Increase positive patient outcomes and
  • Provide a distinct advantage in each organization’s quest to establish a leadership role in their disease area consortia.

A real-world example: ACC and AHA.

Leading non-profit health organizations are implementing their own strategies to unlock more insights from patient data.

The American College of Cardiology (ACC) was an early innovator in establishing connections between researchers and patient datasets from hospitals and other institutions.

In the 1990s, the ACC established The National Cardiovascular Data Registry (NCDR), which the org defines as, “a suite of cardiovascular data registries helping hospitals and private practices measure and improve the quality of care they provide.” ACC’s first-mover advantage meant they were able to bring datasets from a vast number of hospitals and other sources.

Shortly after, the American Heart Association (AHA) began its own patient data registries through its Get with the Guidelines initiative. While the AHA doesn’t have the sheer volume of data, many feel that they’ve curated more specificity from patient-reported outcomes.

ACC and AHA have found their own ways to source data that helps their patients. This industry competition is fine — and even encouraged. Data is a mechanism to improve patient care. We do a disservice by not ethically utilizing data in a secure way that helps maximize its impact.

But there’s one caveat: competition is great, as long as the needs of patients remain at the center of the discussion. Let’s not forget that.

Non-profit health organizations are the megaphone for the patient voice.

Consider everyone in the healthcare ecosystem: researchers, hospitals, pharma companies, etc.

Non-profits and PAOs, by definition, have the most opportunity and responsibility to advocate for the patients of anyone in this ecosystem. Who better to take a leading role in advancing the way we gather insights from clinical research?

Patients can try to crowdsource knowledge on their own by conducting citizen science on social media. Unfortunately, this strategy doesn’t scale. That’s why PAOs and non-profits exist: to ensure that patient voices are heard, and that the benefits of clinical research always come back to the patient.

Forward-thinking PAGs understand that innovation demands investments.

Let’s go back to the financials. Investing in the right data strategy involves upfront costs. Some organizations will shutter at this idea; non-profits are supposed to be lean.

Consider this: clinical data costs are inevitable. Why not put your investment to use in the most efficient way via a data federation?

Clinical data federation involves integrating multiple data sources from hospitals and other data providers into a common format accessible from a centralized location. This approach differs from data aggregation because it doesn’t require any data movement at all. Clinical data is instead analyzed locally across multiple sources simultaneously.

Rather than providing grants or other investment for the same overhead costs of pulling the data, cleaning it, sorting it, formatting it, etc, a data federation allows researchers to quickly and efficiently perform clinical data science projects with higher-quality data given the number of hospital systems within the federation.

Innovation will require time and money, but advocacy groups who have invested in long-term strategies for advancing research are seeing the benefit for their organizational growth and ultimately, for their patients. Just look at the Kidney Cancer Association; they’re federating patient data to fast-track cancer research. Every organization has the same potential for impact in its disease space.

When you advance clinical research, you become a leader.

Data is the key, and organizations have a duty to maximize their impact in an ethical way.

The non-profit of the future will have to be bold to compete. But there’s no reason to be afraid because PAOs and non-profits have the great advantage of being aligned with patients.

Those that identify paths to representative, ethically-sourced data — and move quickly to do so — will become leaders in their disease area. This status will attract mission-aligned funding and the attention of more patients who need your help.

Array Insights: A clinical data federation for next-gen patient advocacy organizations

Array Insights offers software for creating a Clinical Data Federation for connecting patient advocacy organizations, hospitals, and clinical researchers.

Array Insight’s platform allows traditionally siloed data to be accessed and shared securely. Using the power of federated analytics, Array Insights helps avoid potential privacy and security concerns and speeds up data sharing using trained AI models. IT teams can easily federate data by enabling secure access without any actual data exchange.

Array Insights helps PAOs expand their hospital and research network, thus enabling access to more diverse and representative datasets — and alleviating concerns over slow workflows and patient privacy.

Next-gen non-profits need innovative solutions, and Array Insights is ready to help.

Could your PAO or non-profit organization take advantage of a Clinical Data Federation? Securely connect to representative data that enables disease-ending insights at secureailabs.com.

About the Contributor

Anne Kim is co-founder and CEO of Array Insights, which is based on her graduate work at MIT. She worked with Professor Pentland on federated learning and blockchain solutions for clinical trial optimization using Open Algorithms (OPAL). Outside of her research, Anne has led a number of different projects in computer science and molecular biology and cyberbiosecurity work with the EFF, ACLU, and DEFCON.