Patient-reported data (PRD) - are we ambitious enough?


The agreement on the regional economies for 2016 states that hospitals in Denmark will develop tools “that support common decision-making, skill development, and systematic use of patient-reported data (PRD)” by the end of 2019. The work is well underway and the new and more detailed goals mean that we’re now striving to develop a new PRD unit every quarter starting in 2017 and on into the future.

Visit our page to read more about patient empowerment and data driven management in healthcare.

Thus, the use of patient-reported data is developing quickly and is rife with potential. For this reason, we need to find a more systematic, precise approach in the way we use this information. It’s extremely important that we’re aware of the opportunities patient-reported information provides for both patients and the community and that we take a stand on how the reported information should be used and what type of medical practice it should be based on.

Given that the Danish Health Authority already published new follow-up programs on the area of cancer that provided for the use of PRD in several areas back in February 2015, these initiatives are nothing new. In particular the IT and analytical solutions required were already in place. Why wait until 2019 to use patient perceptions of their treatment when as e.g. Dagens Medicin (“Medicine Today”) wrote, it was already acknowledged in 2015 as a problem area?

My colleagues and I have held discussions over several years with Danish, Swedish, and American healthcare organizations that are interested in various ways and/or have practical experience in the use of PRD. Based on these very stimulating conversations, we’ve identified a number of core features for a scalable PRD platform.

The right PRD form for the right patient at the right time through the correct channel

One of the key elements in a PRD platform is the (semi)-automatic distribution of PRD forms. Today, the vast majority of places take care of this function using predominantly manual 1-on-1 processes that can be both time-consuming and prone to the risk that individual patients are inadvertently skipped. The whole or partial automation of this process can be supported by closely linking patient data to the hospital’s data systems. But who are the right patients? Their diagnoses are obviously relevant, but above and beyond that, where they are in the course of treatment, the type of treatment they’re receiving, and probably also other demographic data are important. Furthermore, patients may have a preference with respect to the communication channel used for a PRD form. Should the PRD be collected via e-mail or regular mail, should text reminders be sent or something completely different?

Promote a high response rate

One of the challenges in working with PRD is often a relatively low response rate of 50-60%. It’s well known that an individual’s social status may influence whether the patient answers a PRD form or not.

Therefore, a PRD platform must not only be able to manage the issuance of reminders to patients who don’t fill out a PRD form they’ve been sent, but also be capable of handling special patient populations that are less likely to fill them out. The way these patients are treated may need to be managed completely differently from the outset. The dynamics of being able to integrate available knowledge generalizing how likely different patient groups are to respond is thus a feature that should also be present in a PRD platform.

Make sure PRD input is reacted to

When data is entered by the patient, it’s of the utmost importance that someone responds to this data, where needed. In a PRD platform, there should be options for setting up algorithms that can color-code various risks as well as ensure that the right healthcare personnel are notified if any PRD input requires a response. How these algorithms and notifications should be defined will vary between different patient populations and clinical departments. A PRD platform should be able to handle dynamic communication flows that ensure that the right healthcare personnel are made aware of relevant PRD information so no patients are left behind - regardless whether those personnel happen to be inside or outside the hospital’s four walls.

A scalable PRD platform can’t do the heavy lifting itself

An analytical and technological platform needs a human touch. A very basic requirement for PRD efforts to be able to benefit patients is that professional experts define which patient populations require which PRD form during specific periods of their care cycle. This issue has been worked on for several years at e.g. ICHOM, in international research companies, and in many of the quality databases in Denmark and Sweden, where over time a lot of PRD information has been collected in specific areas.

The prerequisites to start applying patient-reported data to clinical practice are in already in place and can benefit patients’ treatment plans. As I see it, we can make great strides in the use of PRD when 2019 rolls around if regions and hospitals decide to participate. How far have regions and hospitals come actually until now?

Visit our page to read more about patient empowerment and data driven management in healthcare.


About Author

Morten Krogh Danielsen

I have always thought that the healthcare area is exciting. I hope that with my commitment and insight in the area I can contribute to the use of data playing an even greater role in the future. I think we must be better letting the data form the basis for our decisions, this goes for the hospital, department management and hospital staff. I have the privilege to work for SAS Institute as a Director in Advisory Services, Nordic Health Care. I am in daily contact with management and staff at hospitals in the Nordic countries. I work to help them solve their challenges to improve, for example, their patient perceived quality or patient safety in their hospital.

Leave A Reply

Back to Top