Patient Data Return: From 'right thing to do' to ROI

Brian Deighan, VP of Programme Management at Teckro, argues the case for investing in the patient experience

“ROI is the elephant in the room.”

That same sentiment surfaced across several panel discussions on patient data return (PDR) at this year’s SCOPE Summit. It’s a conversation the industry has been circling for years, with a familiar refrain that tends to put PDR issues on ice. Returning data to patients is the right thing to do, so the refrain goes, but the ‘right thing to do’ isn’t what gets budgets approved.

Biogen and Teckro co-presented at SCOPE on this topic – delivering individual data records to participants at scale. Across the SCOPE panels on this topic, the demand to articulate the business case was unmistakable, yet notably, as Clinical Leader reported, Jane Twitchen of Biogen didn’t frame their approach around what the company stood to gain, focusing instead on strategy and execution. So what does ROI actually mean in this context? And how does something like PDR connect to the hard metrics that get budgets approved? The answer isn't as well understood as many in the industry might hope, but the good news is that with the right approach - it does connect, and it all starts with trust.

The chain from trust to ROI

When patients are informed about what's happening in their trial, empowered with convenient ways to participate, and feel valued as genuine partners – they're more likely to build trust and feel invested in the process. PDR is one of the most powerful ways to demonstrate that partnership.

Returning individual data to participants signals recognition of both patient autonomy and their contribution to the trial, transforming a one-directional extraction into a collaboration that is both transparent and reciprocal. PDR also delivers tangible value to patients, supporting ongoing care conversations with useful, accurate data they can't get anywhere else.

Once trust is established, patients are more likely to engage with the trial. Engagement is a more powerful metric than many sponsors realize – and using a digital-first approach is what transforms it into a lever for improved performance.

Our data demonstrates this correlation clearly, with engaged sites recruiting significantly more patients than their less-engaged counterparts. Equipping teams with measurable, actionable engagement data is proven to accelerate timelines, with studies consistently reaching key milestones faster.

In applying the same model to patients, sponsors unlock patient retention – teams can track and measure patient engagement and deploy proactive, targeted interventions that keep patients engaged and on track with visits and other activities. And unlocking retention is the key to the whole business case; leading to protected timelines, reduced overall recruitment costs, and sustained participation through to study completion. When more patients stay, everything downstream improves – and when they don't, costs go up.

The trust gap

But if the chain to ROI starts with trust, how much of it does the industry actually have? Ahead of SCOPE, Clinical Leader published the first installment of a series by the Center for Information & Study on Clinical Research Participation (CISCRP) sharing findings from its 2025 Perceptions & Insights study. A global survey of more than 12,800 respondents, its headline finding was stark: only 18% trust pharmaceutical companies "a lot" – significantly behind research centers, healthcare providers, government research organizations, and regulatory agencies, all of which score above 40%.

This isn’t a new problem. But the scale of the gap should give sponsors pause, especially when set alongside what patients actually want. CISCRP’s own research shows that 72% of patients want to see their individual study data, and 90% consider it important to receive a summary of the research results. A pilot study published in BMJ Open found that when trial data was returned to participants, 42% shared it with their healthcare providers – turning the data into something that directly improved their ongoing care.

Far from being overwhelmed by data, patients are actively asking for it. Despite this, only seven out of 14 responding pharma and biotech companies currently return data to participants (according to PHUSE’s Patient Data Return Project survey). Just one has a formal policy in place.

The will to act may be growing. But the gap between what patients expect and what sponsors deliver remains wide.

Making the chain visible

The Clinical Leader article poses that the ROI of PDR is better public trust. That's the right starting point, but as we've outlined, trust only delivers ROI when the chain from trust to engagement to retention is visible and measurable. And for many sponsors, that's been the problem.

Patient experience has languished as a “nice to have” precisely because there’s been no way to see it working in real time. You can believe that a better patient experience should improve retention, but if you can’t track the connection, you can’t make the case (and you certainly can’t optimize for it).

This is where a digital-first approach changes the equation. When the patient experience is delivered through a digital-first engagement model, every interaction is captured, generating an ongoing stream of behavioral data. Over time, this builds a detailed picture of how patient sentiment shifts – and where intervention can make a difference.

Once this happens, engagement stops being invisible. As the link between trust and retention, it becomes an operational signal that sponsors can track and act on in real time.

PDR in the picture

PDR is a powerful piece of this data-driven model. It reinforces trust, deepens the sense of partnership, and gives patients something tangible and meaningful for their participation. And it works best as part of a broader engagement ecosystem – one that recognizes sites as key stakeholders in the patient experience, and makes the entire journey visible and actionable for sponsors, sites, and patients alike.

The value flows in both directions. Patients get a digital experience that feels responsive and meaningful, while sponsors get real-time behavioral signals that allow them to intervene proactively, support at-risk participants, and continuously improve the experience as it unfolds. Patient experience objectives and ROI outcomes stop living in silos, because they're being measured in the same framework.

Where next?

The SCOPE discussions made one thing clear: the industry has moved past debating whether PDR matters. The real question is what it looks like when sponsors design the patient experience around measurable engagement from the start, and the ROI case is built into the model rather than bolted on after the fact.

PDR isn’t the whole answer. But it’s a critical component of a patient experience strategy that, when built on measurable engagement, connects trust to retention in ways sponsors can actually see and act on.

At Teckro, we're extending this principle from site engagement to patient experience – because the approach is the same at every level: measure engagement, act on it, improve outcomes.

Interested in learning more? Book a demo and learn how to deliver individual data records to participants at scale.