PROs: The “how”
“Is it merely enough to collect patient data? Is that going to solve the problem? Well, probably not – it really needs to be actionable,” he said. “Outcomes don’t get better by themselves; you really need to be collecting data that you, personally, will find valuable for your patients, and ideally it needs to mean something to patients.”
Many of these suggestions are potentially actionable, he noted.
“You can download these forms on paper; this is already connected or connectable to some people’s electronic health record,” he said. “At a minimum, talk to your EHR vendor about whether this might be available, and if not, why not.”
Choose in-office tools that are quick and simple to use, he advised, noting that he finds 6-8 minutes ideal for patient completion of questionnaires and other measures.
“It’s quite reasonable to write a PRO order,” he said. “The notion would be that you decide what specific PROs you want Mrs. Smith to give you, how often you’d like for her to tell you about those things (what you want from her might be different from the next patient), and she can give you that data from a smartphone or maybe something that she wears, and only the data that you asked for comes back.”
Successful collection of such data requires patient engagement in the process, he said, noting that the Center for Education and Research and Therapeutics of Musculoskeletal Disorders at UAB was recently awarded a grant to help develop an arthritis research registry called Arthritis Power, through which patients can provide data via smartphones, track their own health outcomes, participate in studies and surveys, access educational tools, and receive reminders and feedback.
“One of the things that’s quite important to help engage patients is to encourage them. This isn’t one-way data transfer,” he said.
Keeping them engaged requires “contributive science messaging.” That is, telling them they are “part of something bigger [and that they are] helping answer research questions that patients care about.”
It also helps to “bring back value to them” by explaining that you can help them make their data useful for improving their health and that you can derive insights for or with them based on their data.
“You can ‘game-ify’ it and make it fun,” he said, adding that leveraging the social connections associated with some tools can also help.
However, the promise of better access to needed resources, physicians, and the health care system is perhaps the most compelling point for patient engagement, he said.
“[You can say] to your patient, ‘Mrs. Smith, I’d really like to have your Fitbit or Apple Watch data, and I’d like you to tell me how you’re doing, on your smartphone, once or twice a month – it will take about 10 minutes – because I, as your doctor, think I can take better care of you,’ ” he said. “If that’s the ask, I think that might be the most compelling reason for patients to say yes.”
Of note, a number of patient measures are now compensable, Dr. Curtis said, mentioning depression screening using a PROMIS instrument as one example.
Additionally, two American College of Rheumatology work groups are revising the ACR recommendations on functional status measures and will soon generate an “ACR-approved list” of measures, he said.
He stressed, however, that it in addition to understanding the value of specific tools, it is important to know their limitations.
In the PREDICT study, he and his colleagues demonstrated that patient-reported RAPID3 data, when compared with investigator-based CDAI data for assessing RA patients’ response to certolizumab at 12 weeks and predicting response at 52 weeks, resulted in 11.9% fewer patients being classified as responders (64.7% vs. 76.4%), but the actual response rates at week 52 were similar, with 31.5% and 32.3% of patients in the groups, respectively, achieving a low level of disease activity (Arthritis Rheumatol. 2015;67[12]:3104-12).
The concern regarding the finding is that an insurance company may refuse to continue paying for a drug because of the perceived lack of response and thereby unnecessarily force a switch to an alternate drug based on faulty data, he explained.
“That would be the real-world analog of what this trial evaluated,” he said, adding that this has important implications for treat-to-target, pay-for-performance, and merit-based incentive payment systems. “My point is that we need to know the limitations of our tools ... and it’s to not let insurance [companies] write rules for us ... based upon certain tools that have limitations.”
Dr. Curtis reported funding from the National Institute of Arthritis and Musculoskeletal and Skin Diseases and the Patient-Centered Outcomes Research Institute. He has also consulted for or received research grants from Amgen, AbbVie, Bristol-Myers Squibb, CORRONA, Lilly, Janssen, Myriad, Novartis, Roche, Pfizer, and Sanofi/Regeneron.