As traditional sources of funding become less reliable, patient advocacy groups (PAGs) and medical specialty societies (MSSs) need new ways to finance their operations and outreach. Fortunately, many of them already have a valuable asset – their patient registries. With data and evidence now even more important in healthcare, the time is better than ever for PAGs and MSSs to generate sustainable revenues via the data they collect and networks they build.

However, many organizations are hesitant to license their registries due to concerns about how their data will be used. The reality is that many of the common assumptions about monetizing registries are inaccurate. Below we discuss some of the most common data monetization myths.

Myth #1: If we monetize our registry, it will jeopardize our credibility and mission

There is a common fallacy that when healthcare non-profits do business with life sciences companies, it taints their reputation. In reality, working with the healthcare industry aligns with the mission of most PAGs and MSSs. The data and insights these non-profits capture in their registry platforms can be used by life sciences companies to support development and access to safe and effective treatments. This can lead to a true win-win-win opportunity for patients, PAGs, and life sciences companies.

Reality: With a robust monetization and data governance strategy, monetizing your registry can accelerate your mission, fund the next wave of innovation, and strengthen your reputation.

Myth #2: All registry value is in the data

The value of registries to life sciences companies comes from both data-centric and network-centric offerings:

1. Data-centric offerings are based solely on delivering insights off of non-identifiable data, typically through retrospective research. These offerings are often the starting point for organizations considering registry monetization, because they are an easy place to begin.
2. Network-centric offerings tap the registry’s network of providers and/or patients, giving life sciences companies the opportunity to engage with members around specific research programs that cannot be delivered using data alone. Companies can use these networks for engagement activities and to support real-world and clinical trial research programs. Network-centric revenue models can often generate more financial gain than data-driven revenue models due to the increased value associated with direct and actionable engagement.

The most sophisticated PAGs and MSSs can realize substantial revenue opportunities by developing the infrastructure, people, and processes necessary to enable high-value use cases. These include recruiting patients for trials, offering referral services, helping researchers gather patient insights on research designs and endpoints, and supporting the development of new support/education programs for patients around certain therapies or care milestones.

Reality: There is significant value in the network of patients and stakeholders in the registry.

Myth#3: All data is gold

Registry data has to be suited to its intended use—from a variable, coverage, longitudinal, and quality perspective—for it to be valuable to life sciences organizations. To do this, registry owners should determine what life sciences organizations might be interested in collecting, whether other data owners are already meeting that need, and what use cases they are willing to go after. Then they can build their data collection strategy around those goals.

They also need to be sure that the data they collect is research ready. That includes determining whether they have collected enough data to be clinically meaningful, whether it captures the right units of analysis, whether the data is accessible via a single source and format, and whether it is traceable and free from any embargoes.

These questions aren’t always easy to answer, so including a registry expert in the evaluation and planning process can both help identify opportunities in the market and ensure the data is of sufficient scope and quality to be useful.

Reality: Data is valuable when it is fit-for-purpose.

Myth#4: We must go big and fast to achieve sustainability

It’s easy to get overly ambitious about building a registry. But those who take on too much too quickly can expose the organization to unneeded risk and leave a negative impression with potential partners. A pragmatic, stepwise approach is more attainable and less risky, which still provides opportunities to build sustainable relationships in the marketplace.

Ideally, an organization will start with a defined opportunity to monetize their registry that offers quick wins over the first 12-18 months, with the aim of hitting operational scale over a four-five year period. However, every registry is different.

Working with an industry expert can help registry owners map this journey and find the best path toward creating sustainable relationships and revenue streams..

Reality: Slow and steady wins the race. A stepwise approach can demonstrate early value from the registry while providing funding for the next wave of innovation.

Myth#5: We must go it alone in order to have a successful model

Organizations don’t need to set up and run their own monetization models to maintain control and maximize financial returns. Due to the cost and time required to develop robust services and external delivery capabilities, many organizations partner with Contract Research Organizations (CROs), analytics companies, and other healthcare solution vendors to gain the needed expertise and scale quickly and at a low cost. With the right partner and model, partnerships can help accelerate and enhance sustainability without sacrificing control or impacting the organization’s mission or reputation.

Reality: Partnering is a very effective way to implement a monetization strategy without compromising your mission.

Patient advocacy organizations and medical specialty societies have important missions to achieve, and patient registries can be an important part of those missions. Licensing the data and networks within a registry can be a powerful way to accelerate research, while generating resources to support organizational causes. It’s a win-win for the organization, patients, and life sciences organizations who are invested in developing the diagnostics, treatments and cures.

For more information on these five myths, and how to build a sustainable, revenue-generating registry, see our ebook.