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Unpacking Data Insights to Understand How Enrollment Hub is Performing

Rare diseases pose a number of challenges for patients who have them. Connecting patients to the necessary medications for treatment is just one of those challenges.

The Hub offers a means for providers, pharmacies, payers, distributors and other participants in patient care — including patients themselves — to collaborate. In doing so, the Hub also offers a rich source of data. Choosing the right information points for analysis can help teams unpack actionable data insights from Hub information.

Choosing Relevant Data Points for Analysis

The world currently faces a data overload. Vast quantities of digital data points are created every day. The question is no longer how to generate data — rather, the question is how to make meaning from it.

Enter key performance indicators (KPIs). KPIs help teams make sense of their data by focusing attention on quantifiable, relevant items.

According to RJ Messineo at ClearPoint Strategy, effective healthcare KPIs meet four criteria. They are:

  • Well-defined. An effective KPI isn’t vague, nor can it be confused with another metric. “Elapsed time between filing a preauthorization request and payer response” is an example of a well-defined KPI.
  • Quantifiable. Qualitative data like patients’ opinions on treatment are valuable, but they are difficult to assign a KPI to because they are hard to quantify. Measurements like elapsed time, quantities and prices offer quantifiable points for KPIs.
  • Thoroughly communicated. KPIs are useless if no one on your team knows you’re interested in the information — or why it matters.
  • Directly linked to strategic goals. Tracking KPIs that have no connection to your strategic goals wastes your team’s time. It also confuses your team and stakeholders, who may struggle to see a connection between what you’re measuring and what you seek to achieve. Skip KPIs that don’t directly address your goals and focus on those that do.

One way to jump-start the KPI selection process is to examine what your tools are specifically adapted to do. For example, in creating KPIs for the European Reference Networks (ERNs) for rare diseases, Rosaria Talarico and fellow researchers created the RarERN Path methodology “in order to take advantage of the distinctive and peculiar characteristics of the ERNs.” The KPIs and analysis methods chosen for the RarERN path use the ERNs themselves as a starting point.

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Analyzing Hub Data for Actionable Insights

Data collection remains a significant concern for every organization and team involved in rare disease research, drug development and patient treatment. “There are needs for coordinated information on RDs [rare diseases] at national/international levels, based on high quality, interoperable and shareable data,” write Serge Amselem and fellow researchers in a 2021 study in the Orphanet Journal of Rare Diseases.

Amselem, et al. were examining RaDiCo, a French research program on rare disease cohorts. One of the first steps for RaDiCo was to choose a set of key performance indicators to track the participation and follow-up of rare disease cohorts.

For RaDiCo, these KPIs ranged from specific meetings and report filings to clinical trial participation rates, samples collected and measurements of data completeness. For those using the Hub, specific KPIs will differ — but the goal of setting measurable, relevant metrics remains the same.

KPIs that may be relevant to analyzing Hub effectiveness include:

  • Patient attrition data points. Where do patients drop out of Hub enrollment? Why do patients say they dropped out?
  • Payer behavior. How many preauthorizations does each payer approve? When preauthorization is denied, what are the most common reasons?
  • Distribution dynamics. What are distribution rates for various sources? What are the most common reasons for delays?
  • Patient adherence. Are patients sticking to their treatment regimens? If not, what disrupts their adherence?

Teams that choose effective metrics gain a clearer understanding of the data insights that the Hub makes available. They can also find ways to use the Hub that best support their goals and their patients’ needs.

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