Patient-centered care and patient engagement have become central to the vision of a high value health delivery system. The delivery system is evolving from a fee-for-service transactional payment model to a value-based purchasing model using outcome data and quality improvement and attainment. The Centers of Medicare and Medicaid Services (CMS) and private payers have spurred delivery redesign of networks that focuses on a set of clinical quality measures and patient care experiences along with efficiency measures.

However, the questions we ultimately really care are: “Did I get better? Am I healthier?”  With the advent of Facebook, PatientsLikeMe® and Avado, consumers and patients are sharing their healthcare experiences openly with their support system and strangers with similar illnesses. Our delivery system has yet to leverage the power of patient/consumer reported data in feeding back to care deliverers in the quality improvement cycle.

Clinical quality measures have traditionally consisted of process or surrogate measures and centered on providers and hospitals. As we move toward a system based on value, the measurement system must shift as well. Part of this movement will be utilizing outcomes directly reported from patients and their caretakers and incorporating these outcomes into quality improvement initiatives and payment models. The widespread adoption of standardized and validated patient-reported outcomes measures (PROMs) would accelerate the development of a patient-centered health system. However, new standards; patient-friendly, digitally-enabled instruments; secure portals; and more research will be required to facilitate adoption.

Patient-Centered Care And Patient Engagement As National Priorities

The Institute of Medicine’s 2001 landmark report, “Crossing the Quality Chasm,” listed patient-centered care as one of its six aims. The Affordable Care Act reaffirmed the import of patient-centered care through a number of its provisions, including the piloting of patient-centered medical homes and the creation of the Patient-Centered Outcomes Research Institute.  The National Quality Strategy enumerates “Ensuring that each person and family are engaged as partners in their care” as one of six priorities to help achieve the three aims of better care, better health, and lower costs.

Simultaneously, a movement among patients and a number of organizations, such as the Society for Participatory Medicine and Institute for Patient- and Family-Centered Care, around these goals has flourished. In response to these currents in health care, hospital administrators across the country have launched of a number of initiatives targeting patient-centered care and patient engagement.

Additionally, the Affordable Care Act mandates the use of quality and patient care experiences as part of the qualification of health plans in the new State Insurance exchanges. The type of data and their uses are still to be determined during the ongoing insurance exchanges setup process. Undoubtedly, PROMs would be powerful and robust data to empower consumers in the selection of networks, plans or future ACOs.

Patient-Reported Outcome Measures Used In Limited Settings

PROMs, which measure a specific construct, such as health status, symptoms, functional status, or quality of life, have been developed over time and used in research and by payers. For example, in 2004 the National Institutes of Health created PROMIS (Patient Reported Outcomes Measurement Information System). Collaborative research across a number of centers led to the creation a series of brief, valid measurements of physical, mental, and social health.

The VR-12, which measures physical and mental health, has been used by the Veterans Health Administration, CMS, and the National Committee for Quality Assurance for quality assessment. Numerous disease specific measures exist as well.  As David Lansky, Executive Director of Pacific Business Group on Health, points out, Sweden adopted PROMs for orthopedic procedures and has data collected from 90 percent of patients one year after their surgery. The Kansas City Cardiomyopathy Questionnaire measures health status for heart failure patients, and the Seattle angina questionnaire assesses those with coronary artery disease.

Despite the use of PROMs for research and quality assurance in select populations, adoption across larger populations have been limited by a number of factors, including complexity of instruments, resources necessary for administration, and a lack of recognized value by payers, providers, and patients. With the importance of patient-centered care, patient engagement, and PROMs becoming increasingly recognized, we recommend the following to encourage the adoption of PROMs.

  1. Develop standards to capture structured data from patients and families.  The Office of the National Coordinator for HIT (ONC) and the HIT Standards Federal Advisory Committee have done a laudable job in creating standards for data inputted by providers. The certification process has reinforced the use of specified standards, such as rxNorm and SNOMED, for provider-reported data in EHRs as structured data. Similarly, patient-reported data will need a standardized data model to capture patient symptoms and health, such as difficulty breathing, functional status, or mental health. The need for standards will become increasingly important as we begin to move beyond capturing simple information, such as five-point Likert scales in PHQ-9 for depression, to more complicated information.
  2. Create patient-friendly, digitally enabled instruments.  Given the varying levels of health literacy and technology comfort across populations, we need to develop reliable and valid tools that are simple, quick, and optimized for health IT.  Priority should be given to high-impact conditions, such as heart failure, diabetes, ischemic heart disease, depression, and cerebrovascular disease.
  3. Develop portals for patient reporting optimized for mobile devices.  We also need to develop secure portals enabling patients to report outcome data seamlessly either from home or at their provider’s office. Ideally, these portals would be optimized for smartphones or tablets. Already one-third of Americans are smartphone owners, and this number will likely continue to increase. Similarly, tablet ownership has been rapidly rising, notably from 3 percent in May 2010 to 19 percent in January 2012. As more Americans continue to access the Internet via mobile devices, we need to develop the tools to leverage these relatively easy-to-use technologies. Data submitted via these portals could be stored in a patient’s electronic health record and then used for quality improvement or reporting, or both.
  4. Research whether adoption of PROMs translate into better health and better care.  As numerous studies have pointed out, the evidence supporting the ability of health IT to improve quality and health IT is mixed. Health IT may indeed have unintended consequences, such as resulting in more frequent diagnostic testing. We need to better understand whether the adoption of PROMs will lead to better care and better health. We also need to develop electronic clinical decision support tools that will be needed to drive quality improvement on these measures and the electronic reporting structure to submit them to payers.

Interest in PROMs continues to grow rapidly. The proposed regulation for Meaningful Use Stage 2 underscores CMS’s interest in PROMs through its requirement for patient engagement functionality and inclusion of three proposed electronic quality measures incorporating patient-reported functional status. Some of the ONC Beacon communities are piloting PROMs and implementing them in clinical practice. Care Partners Plus®, a for-profit company, created a patient-feedback system for use in provider offices immediately after patient appointments, which could be used for PROMs as well.

Our ability to capture information from patients and integrate it into electronic health records and clinical care is rapidly evolving. As we move toward a patient-centered, high value health system, PROMs can play an integral role if we develop the needed standards, tools, portals and evidence base.