Patient-Reported Outcomes (PROs) are reports that come directly from patients about how they feel or function with their health condition and treatment. Unlike lab results or doctor notes, PROs show the patient’s own view of their symptoms, physical and mental health, and how satisfied they are with their social roles. For healthcare providers and administrators, this helps add important information when judging if treatments work well from the patient’s point of view.
The National Institutes of Health (NIH) Pragmatic Trials Collaboratory supports many clinical trials that use PROs to check healthcare treatments. Their research shows that collecting PRO data well is very important for improving patient-centered care. However, many healthcare systems have problems including PRO measurements regularly because of system and technical challenges.
One big problem in gathering PROs is that healthcare systems have many competing priorities. Providers in the United States face constant pressure to handle many tasks like clinical care, paperwork, reporting, and billing. These urgent tasks often lower the priority of collecting PRO data.
The NIH Pragmatic Trials Collaboratory found that healthcare groups usually put their staff and resources more towards direct care and quality improvement. This limits the focus on adding PRO data collection steps. Doctors and nurses might not be fully involved or interested in collecting PRO data, especially if it might disrupt their usual work.
If clinicians are not involved, the effort to collect PROs does not work as well. For example, if doctors do not think PRO tools are useful, they might not encourage patients to complete them. This gap between care priorities and PRO collection hurts the amount and quality of data gathered.
Also, limits on staffing and budget affect decisions about new data collection processes. When staff is short, adding extra tasks like PRO collection without clear benefits can be hard.
Technology is very important for collecting PRO data successfully. Electronic health records (EHRs) and digital health tools help gather and analyze patient answers in an organized way. But technology use varies a lot in healthcare, and many clinics, especially those with few resources, have low use of tools needed to collect PROs well.
The NIH Pragmatic Trials Collaboratory noted that electronic PRO collection tools often have limited reach in low-resource places with older or less connected systems. Many EHR platforms find it hard to include PRO data regularly because they use different vendors, have complex systems, and face many approval steps for integration.
Also, changes to EHR systems during trials or projects can disrupt how PRO data is collected. For example, if a clinic switches EHR systems, data may become inconsistent. This increases work and makes clinical trials harder.
This difference forces healthcare leaders, administrators, and IT managers to decide how to collect PROs: use the current EHR system, add external PRO data, or rely on separate platforms. Each choice has its own pros and cons related to ease of use, data quality, fitting clinical work, and long-term use.
Another big problem is the lack of agreement on which PRO measures to choose and how to give them in the same way. Without set PRO tools in healthcare systems, it is hard to collect data that is comparable and reliable.
Experts like Lesley Curtis from Duke University and the NIH Pragmatic Trials Collaboratory say it is important to organize healthcare data and use standards like Fast Healthcare Interoperability Resources (FHIR). These help data move between systems and work better together. Common data models like Sentinel, OMOP, and PCORnet also help standardize PRO data, but many places have not adopted them yet.
When PRO data is not standardized, it is harder to analyze and share. This makes it less useful for research and patient care. For healthcare administrators, it means more work to adjust systems or manage many PRO tools for different patients.
Healthcare facility rules, like review boards and committees, often slow down or make it hard to add PRO digital tools. These rules can cause long waits before tools are approved and set up, making projects take longer and cost more.
Collecting PROs is not just a technical problem; people issues matter a lot too. Getting clinicians to support PRO collection is very important. Without strong clinician involvement, patients may not want to complete the outcome measures, and the data may not be used well in care decisions.
Training staff, fitting PRO collection into usual work, and clear roles about who collects PROs also help increase use. For example, collecting PROs during patient visits helps reduce disruption. But if PRO tasks are given to already busy clinical staff, it may not be done well.
When healthcare groups have staff changes or IT support shifts, keeping PRO collection steady is hard. Administrators must plan ways that keep PRO collection going after it is first started.
Artificial intelligence (AI) and workflow automation can help solve some problems with PRO collection and use. These tools can make front-office work easier and lower paperwork for healthcare workers.
Some companies, like Simbo AI, focus on automating phone tasks and answering services using AI. Their systems can handle routine calls. This frees staff to work on important tasks like patient care and PRO collection. Automated AI phone systems can remind patients to fill out PRO surveys, guide them, and collect answers through simple conversations. This helps get more responses and complete data.
AI can also help sort and guide patients based on PRO data to the right care faster. When AI tools connect with EHR systems, PRO data flows smoothly into patient records without manual entry, cutting errors and delays.
Also, workflow automation can set when and how PRO assessments are done in clinics. Automated schedules and reminders mean less need to rely on doctor memory or manual tasks, which can be inconsistent.
Healthcare leaders and IT managers in the US may find AI tools useful, especially in medium or large clinics where many patient contacts can slow work. While using AI needs planning and changes in workflow, it can improve data quality, timeliness, and patient participation.
By mixing AI front-office solutions with continuous clinician help and tech connections, clinics can better handle PRO collection even with many competing tasks.
Collecting meaningful patient-reported outcomes is an important goal for healthcare providers who want to deliver care focused on patients and conduct practical clinical research. The NIH Pragmatic Trials Collaboratory shows that common problems exist in U.S. healthcare systems, such as clinician support, competing tasks, technology use, and data standards.
Healthcare administrators, practice owners, and IT managers should know that solving these problems needs balanced efforts involving workflow changes, technology investment, and attention to people issues. New AI solutions and automation can help improve workflows and raise PRO collection numbers, especially in busy clinics.
By handling these challenges carefully, healthcare groups can better include patients’ views in care and research. This helps produce more effective and personalized treatments.
PROs are instruments that reflect meaningful aspects of health, providing information about outcomes uniquely experienced by patients, such as pain intensity, fatigue, and satisfaction with social roles.
Challenges include competing healthcare system priorities, clinician buy-in for adoption, low technology adoption in low-resource settings, and lack of consensus and standardization in PRO selection and administration within electronic health records.
Researchers highlighted strategies like using separate data collection systems or integrating externally collected PRO data into electronic health records to overcome barriers.
Clinician buy-in is crucial for the successful adoption of PRO measures, as it directly impacts how well these measures are implemented in clinical practice and trials.
Technology facilitates the collection of PROs, but low adoption rates in certain settings can hinder effective data gathering and utilization.
Standardization in PRO selection and administration is essential to ensure consistency, comparability, and validity of data collected across different trials and healthcare settings.
The NIH Pragmatic Trials Collaboratory is a program designed to facilitate clinical trials that integrate health systems and address real-world challenges, including the collection of PROs.
Researchers can choose to collect PRO data from the participating health system’s electronic health record, integrate externally collected data, or use separate systems for data collection.
Competing priorities can divert attention and resources away from collecting and utilizing PROs, potentially affecting trial outcomes and the incorporation of patient perspectives.
Collaboration between the Electronic Health Records Core and the Patient-Centered Outcomes Core enhances the development of effective strategies for the integration and use of PRO measures in clinical trials.
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