- An analysis of online patient communities has shown that healthcare professionals usually don’t look at what matters most to patient satisfaction. This is a huge development for patient reported outcomes (PROs) measures, according to the National Quality Forum (NQF).
The analysis leveraged data from hundreds of thousands of patients from the online community PatientsLikeMe. Patients involved in the analysis manage chronic obstructive pulmonary disease (COPD), multiple sclerosis, and rheumatoid arthritis, and offered feedback about their conditions, quality of life, and functional outcomes.
The survey participants also offered feedback about how medical professionals capture PROs, which are data about how healthcare procedures improved patients’ quality of life, reported from the patient point of view.
Patient feedback on PRO collection revealed that PRO tools are too clinical and not always accessible for the patient. For example, the language used to describe symptoms listed on PRO tools is inconsistent with the language the patients themselves would use. This showed that PRO tools must be re-worded to accommodate non-medical individuals as well as to reflect the symptoms that are important to patients.
Representatives from NQF say one of the primary takeaways of the project, which was funded by the Robert Wood Johnson Foundation, is understanding that the patient voice is key in healthcare. It is important for healthcare professionals to know specifically how to better capture PROs, but even more important for industry experts to know how to tap into online patient communities to develop better healthcare measures.
“Patients are the ultimate stakeholders in their care and their health, so it’s critical to know what they need and value most,” PatientsLikeMe Co-founder and President Ben Heywood said in a prepared statement. “This work is the bridge between our robust online patient communities and the National Quality Forum’s long-respected work to identify the best measures of healthcare quality.”
NQF’s president and CEO Shantanu Agrawal, MD, MPhil, mirrored those sentiments, adding that recognizing the effectiveness of online patient communities in PRO measures is an important development.
Online patient communities offer an important lens into the overall patient experience, and more industry professionals should tap these tools to make improvements.
“We need to focus on the issues that are most important to patients,” Agrawal asserted. “This approach, drawing on the experience of thousands of patients engaged through the PatientsLikeMe community, is a huge step forward to amplify the patient voice to improve healthcare quality.”
This analysis was a part of the NQF’s Measure Incubator, which works to develop better methods for collecting healthcare quality measures in areas where measures are limited or non-existent. More than half of the projects in the Measure Incubator pertain to PROs, an area of patient engagement that is underrepresented throughout the industry.
NQF serves as one of the leading industry organizations promoting the use of PROs.
“The increasing integration of delivery systems provides an opportunity to manage the entire patient-focused episode of care and to assess the impact of care on patient outcomes, including patient-reported outcomes,” NQF says on its website.
PROs offer a unique look into the patient experience because they do not necessarily focus on outcomes measures. PROs give a look into how procedures improved a patient’s quality of life instead of counting objective measures such as preventable hospital readmissions, which can be reduced without consideration to the patient experience.
PROs ask questions about how well a patient can walk after a knee replacement, for example.
However, little is known about aggregating PROs effectively and efficiently and these measures are not yet widely used across the industry, NQF says.
This most recent development about the utility of online patient communities in support PRO collection may help NQF develop better data from patients, ultimately leading to a better care quality.