Health Data – Patient Reported Outcome Measures: Europe Shows Us the Way

By Blair Butterfield

Today the U.S. healthcare system is undergoing systemic transformation, as the focus shifts toward more value-based reimbursement for providers and a focus on increased quality of care along with expansion of access to health coverage. A key aspect of healthcare reform has been to offer incentives for providers who use certified electronic medical records and report key measures on patients. This trend will continue to accelerate over the coming years as more advanced functional requirements and measures for health IT are introduced in return for receiving these incentives. Beginning in 2015, providers who do not participate or whose measures do not meet the required standards will face penalties.

In Stage Two of Meaningful Use (MU), as defined by the Office of the National Coordinator for Health IT (ONC), the requirements for EMR use include the ability to share standardized medical data and some simple types of participation (engagement) of patients in the care delivery process, such as sharing a summary of the patient visit with the patient. Stage Three begins to focus more specifically on capturing and integrating into the provider’s electronic medical record what is termed “patient-generated health data” (PGHD). Recently approved recommendations for MU Stage 3 indicate that these data will be obtained via structured or semi-structured questionnaires (e.g. screening questionnaires, medication adherence surveys, intake forms, risk assessment, and functional status).

Such data will require new tools that fulfill the requirement, such as add-on functionality for EMRs and patient portals so that PGHD data capture can be facilitated electronically. In order that the data inputs are actually provided by patients, these tools will have to meet the usability expectations of today’s experienced consumers, who are accustomed to sophisticated online applications they already use for such purposes as navigation, shopping, home monitoring, and social networking. While it is a truism that healthcare IT as an industry has generally lagged in innovation, we do now see innovations from other sectors being imported and adapted for healthcare, such as mobile applications, online consultations and care delivery, and social networking for patient and provider populations.

The good news is that in Europe the collection of PGHD has been underway for some time, where it is known as Patient Reported Outcome Measures (PROMs). In the United States a similar term, Patient Reported Outcomes (PROs), is also used. In the Netherlands, for example, PROMs is mandated for certain types of patients and conditions—mandated, that is, for the providers, who in turn have the requirement to ensure that their patients participate and respond to the questionnaires. To meet this need, tools are in use that electronically and automatically select validated survey instruments from an integrated library and administer them at the appropriate intervals (before, during, and after treatment as indicated) to patients based on their diagnosis (using ICD coding as a starting point).

These tools are generally integrated via standards-based methods to each provider’s EMR since providers typically prefer to manage all aspects of patient care within the EMR and not have to manage patient records in multiple applications. In PROMs, the patient’s online responses are collected via an online survey process and then scored, compared to normative ranges, and reported in summary form back to the provider in the EMR. For a population level or more detailed analysis of the response patterns, these data can also be exported in a variety of file formats to business analytic applications and data warehouses. The insights gained from analyzing these data are leveraged for various purposes, including identification of best practices, risk stratification, and compliance to care plans. The resulting insights can be integrated into enhanced workflows with the goal to improve the quality and lower the cost of outcomes.

Cases that are being successfully addressed by the use of PROMs have thus far focused on two key areas: behavioral health and certain high-risk and high-cost specialties such as orthopedics and neurosurgery where the patient’s subjective experience is critical to monitor treatment effectiveness and outcomes. It should be noted that where PROMs are applied in behavioral health, the process is more properly referred to as Routine Outcome Monitoring (ROM). PROMs is the more general term that applies across all specialties.

In the Netherlands, there is also a concerted effort to migrate the screening of behavioral health issues from behavioral health specialists back to primary care, for the sake of earlier detection, better value, and improved outcomes. For such efforts to be effective, the Dutch health authorities have seen the necessity for structured approaches in order to standardize the process within the workflows of primary care providers, who traditionally lack the skills and experience to detect and monitor behavioral conditions. In orthopedics, alternatively, the focus of PROMs is on pre-procedural evaluation of quality of life and pain levels, based upon which providers and payers can determine whether a given procedure would be of benefit or not to the individual under consideration.

The value of PROMs in Europe has recently begun to be studied, and early results indicate that, in fact, it does support more evidence-based decision making, value-based care delivery, and right-siting of care. These are all key objectives of the U.S. healthcare system as well. The conclusion thus far is that traditional methods of obtaining PGHD, which relied on paper-based or verbal interactions between providers and their patients during the visit, were less standardized, less easily captured, and less useful than online methods using validated survey instruments. It also stands to reason that where sensitive subjective states of emotion and mental stability are concerned, patients may more easily and truthfully respond to questions posed by a computer-based questionnaire in the privacy of their homes than in direct conversations during office visits.

In summary, PROMs (or PROs or PGHD) is a trend that is beginning to emerge as a consequence of healthcare reform. We expect this trend to continue to strengthen and spread more widely across specialties and care settings, with full support from public and private payers, and become an essential part of gaining a more complete picture of patient health and as a means to gather measurable data for treatment and research purposes.

Blair Butterfield is president, North America at VitalHealth Software, a Mayo Clinic – Noaber Foundation company that develops cloud-based eHealth applications for collaborative care as well as ONC-certified specialty electronic health records. He is also a member of the Board of Directors of USA Mobility and Amcom Software (NASDAQ:USMO) and a past member of the Board of Directors of the Ehealth Initiative, the Consumer Engagement Advisory Council of the National eHealth Collaborative.

Prior to joining VitalHealth, Butterfield served as vice president, eHealth International Development at GE Healthcare. In this role, he led strategic initiatives in North America, Europe, the Middle East, and Asia. Blair has served on national workgroups on interoperability, consent management, health information exchange (HIE), and electronic health records (EHR). After graduating from Yale University, Butterfield spent the first part of his career in advanced applications for medical imaging and image-guided neurosurgery, working with luminary sites to pioneer innovative technologies for minimally invasive diagnosis and treatment. He may be contacted at