In a new article in eGems, the NIH Health Care Systems Research Collaboratory’s Patient-Reported Outcomes (PRO) Core gathered first-hand experiences on the incorporation of PROs for both care and research. The Core uses case studies from seven programs to present practical approaches for initiating and implementing PROs. The article includes tips on instrument selection, methods for integrating PRO collection into clinical workflow, consideration for user experience, and methods to monitor and assess data quality.
Read the full article: Case Studies from the Clinic: Initiating and Implementing Patient-Reported Outcome Measures
Patient-reported outcome (PRO) measures are often used in pragmatic clinical trials to assess endpoints that are meaningful to stakeholders. These measures may also support patient care, although there is mixed evidence about effects of PROs on (1) improved patient-provider communication, clinical decision-making, and patient satisfaction; (2) enhanced patient outcomes; and (3) helped ensure better quality of care from a healthcare systems perspective. In a new white paper from the Collaboratory Patient-Reported Outcomes (PRO) Core, the available evidence in the literature is examined to determine when PROs have the potential to provide added value to patient care.
The full text of the white paper can be found here: Impact of Patient-Reported Outcomes on Clinical Practice_V1.0
In recent health information technology news, the University of California, San Francisco (UCSF), has received a 5-year National Institutes of Health award to support its launch of a cardiovascular mHealth platform. The research platform, to be named Health ePeople, will build on the successes of UCSF’s Health eHeart Study, which began in 2013. That study, with more than 30,000 participants worldwide, uses the power of mobile technologies to collect cardiovascular data and patient-reported outcomes (PROs) from study participants.
The Health ePeople platform will advance mHealth by providing researchers with easy access to a large cohort of volunteers, along with a quick, affordable means for collecting their health data through mobile and wireless technologies. Though the platform will not be ready to enroll new participants for several months, people who want to participate in the cohort can sign up through the Health eHeart Study website.
For information and short videos on mHealth technologies, visit the Living Textbook’s chapter on mHealth and PROs.
In a study recently published in JAMA Oncology, researchers found that patient reporting of adverse events of cancer treatment using a new scale gave valid and reliable assessments that correlated with standard measures of functioning and quality of life. The National Cancer Institute (NCI) developed a patient-reported outcome (PRO) version of its Common Terminology Criteria for Adverse Events (CTCAE), which is the standard system for reporting toxicities of cancer treatment in clinical trials. The PRO-CTCAE was then tested among more than 900 patients undergoing treatment at 9 cancer centers. As described in a commentary by Benjamin Movsas, MD, these results are encouraging for PROs to be integrated in informing treatment recommendations, symptom management, and even labeling decisions.
Read more about PROs in the Living Textbook chapter on this topic.
In January of 2015, the NIH HCS Collaboratory’s Patient-Reported Outcomes (PRO) Core Group convened a 2-day workshop in Baltimore devoted to identifying barriers and possible solutions to the use of NIH-supported PRO tools in comparative-effectiveness research (CER).
Findings from the meeting, which include case study presentations and reflections from multiple stakeholders representing the research, clinical, and patient communities, were distilled into a summary document available from the NIH Collaboratory Knowledge Repository at the link below:
The workshop summary is also available on the Living Textbook’s “Tools for Research” section, under “Patient-Reported Outcomes White Paper.”
The National Patient-Centered Clinical Research Network (PCORnet) Patient-Reported Outcomes (PRO) Task Force has released a new white paper that delineates definitions for data contributed by patients. They hope to facilitate the incorporation of information provided by patients across the networks and to maximize data sharing and interoperability by operationalizing the terms within PCORnet.
The following three terms were adopted to describe the patient-contributed data collected across PCORnet:
PATIENT-REPORTED OUTCOME (PRO): a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.
PATIENT-CENTERED OUTCOMES: outcomes that matter to patients
PATIENT-GENERATED HEALTH DATA: health-related data (such as health history, symptoms, biometric data, treatment history, lifestyle choices, and other information) that are created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern. Patient-generated health data include patient-reported outcomes.
The white paper can be found under Patient-Reported Outcomes White Papers on the Tools for Research page on the living textbook, or accessed directly here (PDF).
Michael Bass and Maria Varela Diaz of the Department of Social Sciences, Feinberg School of Medicine, Northwestern University, have kindly given the Living Textbook permission to post their presentation (link opens as a PDF) about how to use an application programming interface (API) to create a computer adaptive testing (CAT) program that integrates patient-reported outcome (PRO) measures with an institution’s electronic health record (EHR) system.
With a CAT approach, PRO assessment can cover a wide range of question/response items with increased precision. In their CAT application, the authors describe a clinical use case for a mobile health solution, using measures from the NIH-sponsored PRO Measurement Information System (PROMIS®) domain framework, in which a health assessment is issued by a physician, administered to a patient via phone, and then sent back to the EHR.
You can read more about CAT in the Patient-Reported Outcomes chapter of the Living Textbook.
A new Living Textbook topic chapter, “Learning Healthcare Systems,” has just been published. The topic includes background information on the creation and evolution of the concept of the learning healthcare system and the key attributes that define such systems, as described by the Institute of Medicine:
A learning healthcare system is [one that] is designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care .
Also included in the topic chapter are ethical and regulatory implications for learning healthcare systems, patient and public engagement, the application of electronic heatlh records and other information technology, logistical and organizational challenges to bulding learning healthcare systems, and early examples of such systems in practice.
1. Institute of Medicine. The Learning Healthcare System: Workshop Summary. Olsen L, Aisner D, McGinnis JM, eds. Washington, DC: National Academies Press; 2007. Available at: http://www.iom.edu/Reports/2007/The-Learning-Healthcare-System-Workshop-Summary.aspx. Accessed April 4, 2014.
On Thursday, April 17, The Diane Rehm Show, a nationally syndicated news and call-in program carried on National Public Radio, aired a program titled The Promise and Perils of a New Project to Share Individual Patient Records. Susan Page of USA Today led the discussion on PCORnet: the National Patient-Centered Clinical Research Network, which is supported by the Patient-Centered Outcomes Research Institute (PCORI). Dr. Joe Selby, the executive director of PCORI, describes how PCORnet will take advantage of the incredible quantity of clinical information in electronic health records to conduct much-needed research on the relative effectiveness of different medical devices, drugs, and other medical therapies. Click here for a transcript of this program, or listen to the full episode below:
Listen now: The Promise and Perils of a New Project to Share Patient Records
As the use of PROs in both research and routine patient care has grown, so has the use of mobile technologies (such as smartphones, tablet computers, and portable or wearable medical devices). These technologies, known collectively as “mobile health” or “mHealth” devices present a wide array of challenges and opportunities for medical research. The links below provide access to a series of short video segments on mHealth technologies that were adapted from a larger web seminar sponsored by AcademyHealth and the Robert Wood Johnson Foundation and used here with kind permission from AcademyHealth: