Creating value from clinical data registries

Healthcare associations traditionally help their members by offering services like education, advocacy for their speciality and health policy. But this traditional support is struggling to meet the needs of members. Unprecedented change in the market, pressures on non-dues revenue growth and a shifting regulatory landscape are significant challenges.

In response, many associations have developed Qualified Clinical Data Registry (QCDR) offerings, which let members comply with regulatory guidelines more easily. Today, the breadth of data held in QCDRs is creating an opportunity to drive growth and innovation, if harnessed effectively.

From our experience working with clinical data registries, there are two key ways to seize that opportunity:

Define the registry value proposition and rethink the strategy around QCDRs

The provider industry is maturing beyond the need for quality reporting to Centers for Medicaid and Medicare (CMS), yet associations are still working to define the value proposition of their registry offerings.

Associations should determine what’s core to their members, which will help attract the breadth of practice settings and participants needed to represent the specialty. This involves clearly defining the offering for each target customer segment. For example, the value from participation for a small practice is different from the value to a large academic medical centre. Similarly, the value to a researcher is different from the value to a practice administrator.

Associations recognise their future lies in capturing clinical data to improve treatment for their specialties. But there’s limited value in providing members with a QCDR because most members qualify for an exemption to CMS’ reporting requirements. QCDRs have succeeded in their purpose of reporting data to CMS, but that requirement, and its associated penalties, apply to an ever-smaller group of providers.

The rest of the provider industry needs new use cases to justify the continued use of QCDRs within their organisation. There needs to be a value proposition that goes beyond reimbursement to ensure associations use this valuable data asset effectively.

Increase focus on patient-reported data

Understanding outcomes reported directly by patients can provide insights that drive the continued improvement of care. By engaging patients effectively, associations can develop a deeper understanding of how patients view the quality of care. While there’s widespread interest in adopting patient-reported outcome measures, adding data into electronic health records, encouraging associations to align measures across the industry and getting consistent patient adherence and response have been difficult.

By rethinking the value proposition and focusing more on patient-reported data, associations can seize the opportunity of developing a clinical registry business. As the industry continues to mature, associations should continue to share best practice to support the growth of registries. Developing a registry is an opportunity to redesign the organisation’s business model to drive growth and innovation.