What is the best source of healthcare resource use (HRU) data?
Health economists generally agree that there’s no gold-standard approach to HRU data collection, with different methods suiting the needs of different analyses. Three of the most common sources of HRU data are:
clinician-reported data (e.g., health records, clinical trial investigator case report forms, and expert opinion),
secondary datasets (e.g., medico-administrative and health-record databases), and
patient- or caregiver-reported data (e.g., surveys and diaries).
Clinician-reported data and secondary datasets are often valued for their perceived accuracy and reliability, largely owing to the prompt professional recording of information.
Patient-reported data, on the other hand, may be overlooked or underestimated. Here we discuss some of the reasons why this might be and, importantly, how to overcome them.
1. Patients may struggle to accurately recall what care they have received
One of the biggest challenges with HRU surveys is making sure patients can remember the details of the care they received.
Surveys often ask patients to remember events that happened several months ago. However, many people struggle to remember details from that long ago, such as the length of their hospital visit, or precisely which tests and treatments they received while they were there. Recall issues like this can lead to inaccurate or missing data.
Recall periods in surveys should be short, while being appropriate to the target population and HRU type. Diaries that patients can complete when convenient, soon after receiving care, are less likely to suffer from recall issues than infrequent retrospective surveys.
2. Patients might not understand the questions
HRU surveys can only collect useful data if patients understand what they are being asked and how to answer.
Challenges arise when patients lack cognitive capacity (e.g., if they have mental health problems) or when survey wording and presentation are unclear. An issue that often causes confusion is that surveys tend to overestimate the average layperson’s knowledge of healthcare terminology – for example, assuming they will know whether they visited a nurse or a nurse practitioner, or the difference between two similar-sounding, but different costing, procedures. Lack of patient understanding can lead to incorrect or irrelevant answers.
When designing an HRU survey, try to make sure it can be understood by someone who has a low educational level and little prior understanding of the healthcare system. Test your survey to make sure researchers and patients have the same understanding of what it is asking. If translating for different countries, consider how differences in language structure, culture, and healthcare systems may affect interpretation.
3. Filling in surveys can be a burden on patients
HRU surveys that are long, complex, or need to be completed too often can cause excessive patient burden. As a result, patients might rush or skip survey questions, or decide to drop out of studies. This can lead to missing or poor-quality data.
Make life easy for patients! Keep surveys short and simple. Present them soon after the point of care, to reduce recall effort. Make it convenient for patients to access surveys – consider something like a smartphone app that patients can enter data into whenever they want.
4. Surveys are so different that it’s difficult to compare results
There are few well-validated, published HRU surveys available. Those that do exist are very different from each other. Most have been designed in isolation, for a specific study or patient group, which makes it difficult to compare results between surveys.
Because of the lack of established, widely applicable surveys, researchers often create their own, or modify existing surveys to suit their needs, which of course exacerbates the problem.
We need standardized surveys. Standardization means that surveys have a similar structure and collect similar outcomes regardless of the patient population or disease. This could be done in a few slightly different ways: a single generic survey for all patient populations, possibly with disease-specific add-on modules for more nuanced data, or a family of similar surveys for different patient groups. These standardized surveys then need to be well validated, and available for public use or purchase.
The value of patient-reported HRU data
Although there are definitely challenges with collecting HRU data direct from patients, we hope we’ve convinced you that these can be overcome. When data collection is approached with care, using well-designed surveys, patient reports can be a valuable asset, allowing researchers to efficiently collect individual-level data about a wide range of HRU drivers. Ultimately, patients are the most likely to know about all the care they have received, so they are a valuable group to talk to!