Wiki Approaches to Enhance Reach and Breadth of Stakeholder Involvement in Identification of Practical Patient-Reported Measures for Primary Care

Richard Moser* Richard Moser*, National Cancer Institute, Bethedsa, United States
Russell E Glasgow, National Cancer Institute, Rockville, United States
Bradford Hesse, National Cancer Institute, United States

Track: Research
Presentation Topic: Building virtual communities and social networking applications for health professionals
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Auditorium 130
Date: 2011-09-18 01:00 PM – 02:30 PM
Last modified: 2011-08-15

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There has been substantial investment in and emphasis on the widespread and meaningful use of electronic health records (EHRs). EHRs represent a valuable opportunity to capture standardized data from millions of patient encounters. While this is an advance in patient care and health research, there is a significant problem: currently EHRs fail to capture data reflecting crucial social and behavioral determinants of health. Further, there is no standard way to compare performance across healthcare organizations on behavioral or psychosocial issues. Critical national efforts will be hindered without inclusion of patient-reported factors. For example, the patient-centered medical home and patient-centered comparative outcomes research cannot achieve their potential without inclusion of the patient perspective and patient reported measures.
This project involved a national effort led by the NIH in collaboration with the health policy committee of the Society of Behavioral Medicine. It used a variety of procedures, prominently including social media, to engage a broad range of stakeholder groups to identify a harmonized set of measures to assess: 1) health behaviors (smoking/tobacco use, physical activity, eating patterns, risky drinking, and medication taking); 2) socioeconomic determinants (education, age, address); 3) psychosocial problems (anxiety, stress/distress, depression); 4) health related quality of life; and 5) patient goals and preferences for care and communication. Interdisciplinary workgroups initially identified a small set of potential measures that were posted for comment on a web-based social media wiki. Members of 40 professional organizations were invited to evaluate the pros and cons of each measure and suggest alternatives. A national ‘town hall meeting’ will follow the 5 week wiki process to discuss results and obtain input from four groups of stakeholders: patients, primary care teams, health care decision makers and researchers.
Work groups identified from one to four alternative sets of items for each of 13 domains of health behaviors and psychosocial issues. After the first 2 weeks of the wiki process, over 70 comments have been posted. The wiki will close on April 4, 2011 and we will present usage data on the number and characteristics of those who participate, as well as the pattern of interactions over time, the types of discussions in both web-based and in person components, and lessons learned from this experience.
Use of social media to deliberate on scientific and practical issues involved in healthcare decisions is relatively new. This exercise involved a large range of healthcare and professional organizations including primary care organizations, professional societies, patient advocacy groups, public and private healthcare organizations, government and regulatory agencies, EHR and patient portal vendors, nongovernmental organizations and private foundations. It combined both web-based wiki approaches and in person dialog. The broad based invitation to participate in the wiki at times and places of persons’ choosing was an innovative component to our measures identification and resulted in more well-rounded and thorough decisions. We will report on lessons learned from this natural experiment and plans for future efforts to use social media for multidisciplinary and stakeholder engagement.

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