With the move to value-based healthcare and telemedicine in response to the COVID-19 pandemic, electronic capture of patient-reported outcome measures (PROMs) is increasing in popularity and official recognition.
While the development of partnerships between health organisations with platform vendors is commendable, decision-makers need to apply caution when engaging based on price alone. The majority of vendors in the current market are focused solely on providing a cost-efficient and convenient method for collection of data and some superficial analysis, presented to either the patient or the healthcare provider. However, data collection is just one component of a rather complex process leveraging PROMs information for value-based health, or to derive insight for continued evolution of best practice. Cheap collection methods can lead to very expensive analysis, or a block of useless data that doesn't address any stakeholder aims.
We would urge any organisation considering partnerships in this space to ask:
What questions are to be answered with the data collected with an electronic platform?
What additional data held in other systems is required to provide PROMs data adequate context for appropriate interpretation?
What quality measures will be available to ensure the trustworthiness of the data collected?
How will the usability of the data be ensured for the health providers and other stakeholders - particularly for analysis required to make informed decisions?
With these questions in mind, we point out some issues with cheaper PROMs platforms that can impair the ability to derive useful insights:
1. Lack of context
There is a vast gap between collecting PROMs and answering meaningful questions about the provision of healthcare, or patient responses to treatments offered. To put together an analysis that will withstand scrutiny from peer-review or pass muster from regulatory bodies requires information that is captured in other systems, as well as thought and structure that cannot be captured in a software package. The data collected cannot exist in a vacuum and be expected to be useful, it must be planned and its use tied to specific aims and questions.
2. Poor availability of measures
The majority of offerings in the market currently provide a set of fixed outcome measures for various pathologies or conditions, with limited capacity to add new ones for individual customers. This can lead to fragmenting of methods for efforts that require an additional set of responses in addition to the set offerings. For the measures that are offered, the scoring methods and algorithms can change over time. How this is managed in datasets over several years of collection can be crucial to the usability of the data.
3. Lack of flexibility/responsiveness
Simple patient registration and automatic patient follow up are attractive features until you think about what that means in the context of patient care. For automatic follow up to work, the "treatment" and its date of "completion" must be clearly defined and the patient must stay with that treatment record until the automatic schedule is complete. What happens when the patient presents with pathologies on both sides of the body? And what if the patient presents each side at different times? Can the patient details initially registered be altered, and what does that mean for the automatic follow up schedule? Set and forget platforms can struggle in these areas and contribute to lengthy and expensive analysis phases to make sense of patient responses.
4. Inadequate connectivity
While exporting PROMs data from a platform is relatively standard, making a platform responsive and establishing patient context requires a greater level of connectivity to other data sources. In some cases, this may be as simple as having a common identifier between other sources and the PROMs platform that can be stored at the point of registration. Often however, the platform creates a silo of data that cannot be easily linked to any other source, because it doesn't have the capacity to accept other data as inputs. In cases where it is possible, it becomes such a manual effort to keep multiple systems updated that it just doesn't happen. Where the data can be trusted, low-cost PROMs platforms can be restrictive with regard to the type and format of data exports, which in every case must be performed manually through a user interface. This becomes prohibitive in high throughput clinical environments.
In summary, decision-makers are urged to look beyond the ticket price when adding capabilities of PROMs capture to their organisation or making recommendations to their members in the context of associations negotiating offerings with vendors. While PROMs still hold considerable potential to better inform healthcare provision, expending stakeholder goodwill on systems that offer useless datasets years into the future may move the sector further away from the vision of data-informed decision making.