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From 2001 to 2006, researchers at the University of Oregon defined patient activation (the extent to which the patient is an active and informed health care consumer) as it relates to those with chronic illness (as well as those with no chronic illness), and developed and tested an instrument to measure patient activation.
The Robert Wood Johnson Foundation (RWJF) supported this unsolicited project from 2001 to 2006 through three grants totaling $504,963.
Improving health care quality and controlling costs require the participation of active and informed patients and consumers. This is especially true for Americans with a chronic condition. They need ongoing care, account for a large portion of health care costs and must play an important role in their health and health care.
By actively participating in their health care, people with chronic illness are likely to get better care, and to stimulate improvement in the health care system, according to researchers at the University of Oregon's Department of Planning, Public Policy and Management.
However, researchers did not know which skills, knowledge, beliefs and motivations patients and consumers needed to become more active and informed (or "activated") health care consumers. In addition, there was no measure to assess how active health care consumers are.
During the period of these grants, RWJF aimed by 2007, to accelerate improvement on nationally adopted measures of outpatient chronic care quality through local market demonstrations.
RWJF pursued a four-part strategy to build on previous work to improve the quality of chronic care. Its investments sought to:
These grants supported the second part of the strategy.
The Foundation designed its national program Improving Chronic Illness Care (ICIC) to help health care organizations redesign care to improve the clinical and functional outcomes of patients with chronic illness. ICIC seeks to support research to increase understanding of the interventions and health system changes that favorably affect chronic illness outcomes.
In support of RWJF's efforts in ICIC, this project was designed to operationally define "active consumerism" as it relates to chronic disease and develop and test an instrument to measure this construct. The components of this project included:
The project staff also conducted initial qualitative exploration of the perceived clinical utility and tested the criterion-related validity of the Patient Activation Measure (PAM) with patients between the ages of 50 and 70 who had at least one chronic illness. Last, the project sought to make the PAM more feasible for use in the clinical setting and more practicable for use in large-scale evaluations and surveys.
Judith H. Hibbard, Dr.P.H., a professor of health policy at the University of Oregon, and colleagues defined what it means to be an active and informed patient or consumer (patient activation), especially for patients with chronic illness. They then developed and tested a survey instrument to assess patient activation.
The project team conducted this work under three grants from RWJF (ID#s 040162, 045425 and 050787), from 2001 to 2006.
To define the concept of patient activation, the project team:
The project team began with 80 items from existing measurement instruments and items team members created. They refined and tested the items with people with chronic conditions, eventually choosing 22 items. Team members then tested the reliability and validity of the instrument.
Finally, they evaluated the instrument in a national sample to gather baseline data and further assess its validity.
For details on the methodology, see Appendix 1.
To make the PAM more feasible for use in doctors' offices and large-scale evaluations and surveys, the project team created a short, 13-item version of the instrument.
The project team identified nine items for deletion by reexamining data from the national telephone survey and using Rasch analysis to identify items within each stage of patient activation that could be deleted while still maintaining the precision of the original measure.
To evaluate the performance of the 13-item instrument, the team used the survey data in various subgroups and compared the results to those of the 22-item instrument.
The project team also:
With funding from RWJF's Improving Chronic Illness Care program, Ronald Stock, M.D., M.A., Hibbard and two other members of the initial project team conducted a related patient activation study at Sacred Heart Medical Center in Eugene, Ore. (grant ID# 048999) from 2003 to 2006). Improving Chronic Illness Care helps health care organizations redesign care to improve the clinical and functional outcomes of patients with chronic illness.
The project team studied whether patient activation is a changing or changeable characteristic and whether changes in activation accompany changes in health behavior. The team randomized 479 patients ages 50-70 with chronic conditions from PeaceHealth Medical Group in Lane County, Ore., into intervention and control groups:
The project team used the 13-item Patient Activation Measure to collect data at baseline, six weeks (at the end of the intervention) and six months.
Participants in the intervention group took the self-administered survey at baseline and six weeks, and completed a telephone survey with a member of the project team at six months. The project team surveyed control group participants by telephone at all three time points. Eighty-seven percent of participants completed all three surveys.
The project team published five articles on the Patient Activation Measure (one an outgrowth of the related grant, ID# 048999, described above), including three in Health Services Research and one in Health Affairs. Team members also made 27 presentations related to the project at professional and local meetings. See the Bibliography.
The project team reported the results described below in two articles in Health Services Research; and two articles in Health Services Research ("Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers," Health Services Research, 2004; and "Development and Testing of a Short Form of the Patient Activation Measure," 2005).
The project team reported the following findings in "Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers," Health Services Research, 2004:
The project team reported the following findings in "Development and Testing of a Short Form of the Patient Activation Measure," Health Services Research, 2005:
The project team reported the following findings in "Do Increases in Patient Activation Result in Improved Self-Management Behaviors?" Health Services Research, 2007:
The project team reported the following conclusions in "Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers," Health Services Research, 2004:
The project team reported the following conclusion in "Development and Testing of a Short Form of the Patient Activation Measure," Health Services Research, 2005:
The project team reported the following conclusion in "Do Increases in Patient Activation Result in Improved Self-Management Behaviors?" Health Services Research, 2007:
Evaluators of two RWJF national programs—Obesity Prevention in Children: Synergy with Diabetes Initiative and Aligning Forces for Quality: The Regional Market Project—are using items from the Patient Activation Measure in their evaluations, according to Anne F. Weiss, one of the RWJF program officers for this project.
Health care delivery systems and disease management companies are beginning to use the Patient Activation Measure to tailor their care, according to the project director. Several associations or organizations involved with health care quality are also using the Patient Activation Measure, including:
Researchers have licensed the instrument for use on about 75 studies worldwide.
"This measure has gotten a lot of uptake in the health care community in a relatively short period of time because it is good predictor and because it makes sense to people—it kind of captures the continuum of their involvement," said Robin E. Mockenhaupt, one of the RWJF program officers for this project. "It's a measure with good reliability and validity."
Measuring Chronically Ill Consumers' Active Participation in Their Health Care
University of Oregon (Eugene, OR)
University of Oregon School of Architecture and Allied Arts (Eugene, OR)
Judith H. Hibbard, Dr.P.H.
Methodology - Testing the Patient Activation Measure
To evaluate the performance of the instrument and further assess its validity, the project team conducted a random national telephone survey of 1,515 people 45 years and older. Seventy-nine percent of respondents had a chronic condition.
The Chronic Disease Self-Management Program
Hospitals, senior centers, libraries and other community settings use the Chronic Disease Self-Management Program. Two trained leaders facilitate the workshop. At least one of the leaders has a chronic condition and is not a health professional.
The workshop covers:
Each workshop participant receives the book Living a Healthy Life With Chronic Conditions, 3rd Edition, and an audio relaxation tape, Time for Healing.
Classes are highly participative. Mutual support and success builds the participants' confidence in their ability to manage their health and maintain active and fulfilling lives.
The Patient Activation Measure: 13- and 22-Item Versions
Items in bold are not on the 13-item Patient Activation Measure.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Hibbard JH. "Improving the Quality of Care through Research: Measuring Patient Activation." In: Patient Advocacy for Health Care Quality: Strategies Activating Patient-Centered Care. Earp JL, French EA and Gilkey MB (eds). Boston: Jones and Bartlett, 2007.
Hibbard JH. "New Roles for Patients and Consumers in Assuring High Quality Care." Virtual Mentor, American Medical Association Journal of Ethics, 6(6): 2004. Available online.
Hibbard JH. "Perspective: Moving Toward a More Patient-Centered Health Care Delivery System." Health Affairs Web Exclusive. October 2004. (Available online to subscribers.)
Hibbard JH, Mahoney ER, Stockard J and Tusler M. "Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Patient Activation." Health Services Research, 39(4): 10051026, 2004. Available online.
Hibbard JH, Mahoney ER, Stockard J and Tusler M. "Development and Testing of a Short Form of the Patient Activation Measure." Health Services Research, 40(6 Pt. 1): 19181930, 2005. Abstract available online.
Hibbard JH, Stockard J, Mahoney ER, Stock R and Tusler M. "Do Increases in Patient Activation Result in Improved Self-Management Behaviors? A Further Validation of the Patient Activation Measure (PAM)." Health Services Research, 42(4): 14431463, 2007. Abstract available online.
Hibbard JH and Tusler M. "Assessing Activation Stage and Employing a 'Next Steps' Approach to Supporting Patient Self-Management." Journal of Ambulatory Care Management, 30(1): 28, 2007. Abstract available online.
Hibbard JH, Peters EM, Dixon A and Tusler M. "Consumer Competencies and the Use of Comparative Quality Information: It Isn't Just About Literacy." Medical Care Research and Review. Medical Care Research and Review, 64(4): 379394, 2007. Abstract available online.
Mosen D, Schmittdiel J, Hibbard JH, Sobel D, Remmers C and Bellows J. "Is Patient Activation Associated with Outcomes of Care for Adults with Chronic Conditions?" Journal of Ambulatory Care Management, 30(1): 2129, 2007. Abstract available online.
"Measuring Activation to Improve Quality and Outcomes," at the Translating Research into Practice Seminar, Center for Health Research, September 2007, Portland, OR.
"Patient Activation as an Outcome of Care," at the Health Foundation, July 2007, London.
"Consumer Driven Health Plans and Consumer Activation," at the Annual Research Meeting of AcademyHealth, June 2007, Orlando FL.
"Toward Consumer Engagement: What Will Stimulate Consumers to be Better Managers of their Health and Health Care?," at the Academy Health Invitational Meeting on Consumer Activation, February 2007, Washington.
"Using Measurement to Improve Care," at the Center for Health Care Strategies Meeting, Managed Care for People with Disabilities: Purchasing Institute, February 28, 2007, San Francisco.
Judith H. Hibbard, "Measuring Activation and Improving Outcomes," at the MedImpact Annual Conference 2007, Architecting the Future of Health Care, March 8, 2007, San Diego.
Judith H Hibbard "Activation and Health Outcomes," Avatar's Users Symposium Meeting, May 2, 2007, Sarasota, FL.
Judith H Hibbard "Improving Outcomes by Tailoring Care" WebMD's Quality Services' 2007 Select Quality Care Customer Conference, Cambridge, MA, May 16, 2007.
Judith H Hibbard "Measurement and Improving Family-Centered Care," at the Institute for Family-Centered Care's 3rd International Conference on Patient- and Family-Centered Care: Partnerships for Enhancing Quality and Safety, August 1, 2007, Seattle.
Judith H Hibbard "Improving Outcomes in Disease Management by Activating Patients", at the Disease Management. Association Leadership Meeting, December 2006, Denver.
Judith H Hibbard "Activating Consumers," at the National Program Meeting of the Robert Wood Johnson Foundation, November 2006, Princeton, NJ.
Becker and Roblin, "Effect of Psychological and Social Factors on Health & Healthy Behaviors in an Employed MCO Population." Emory University & Kaiser Permanente Georgia, Center for Health Research, Georgia, 2005.
Becker and Roblin, "The Influence of Primary Care Practice Climate on Patient Trust in Physician, Activation, and Health." Emory University & Kaiser Permanente Georgia, Center for Health Research Georgia, Presented at Academy Health, June 2007.
Report prepared by: Robert Crum
Reviewed by: Lori De Milto
Reviewed by: Marian Bass
Program Officer: Robin E. Mockenhaupt
Program Officer: Anne F. Weiss
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