November 2007

Grant Results

SUMMARY

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.

Key Results

  • A survey instrument—called the Patient Activation Measure (in 13- and 22-item versions)—to assesses patient knowledge, skill and confidence for self-managing health care.

    Clinicians can assess individual patients and use the results to develop and implement tailored health care plans. Researchers can evaluate and compare interventions and health care delivery systems across populations. Health plans can segment their populations and more efficiently use their resources to deploy more help and attention to those low in activation.

Conclusions

  • According to the project team, "[T]he Patient Activation Measure (PAM) appears to be a valid and reliable instrument to measure activation."

Funding
The Robert Wood Johnson Foundation (RWJF) supported this unsolicited project from 2001 to 2006 through three grants totaling $504,963.

 See Grant Detail & Contact Information
 Back to the Table of Contents


THE PROBLEM

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.

 Back to the Table of Contents


RWJF STRATEGY

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:

  • Define and measure the quality of outpatient care at the individual practice and provider levels.
  • Build consumer and purchaser demand for public reporting of quality measures and for the delivery of high-quality care.
  • Line up forces within specific local markets to achieve public reporting and facilitate improvements in care (e.g., purchaser demand, measurement, consumer demand, provider improvement efforts, provider competency, leadership).
  • Track and communicate national progress on the Foundation's quality strategy.

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:

  • Focus groups with consumers living with a chronic disease.
  • An expert consensus process.
  • Development and testing of a measurement instrument.

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.

 Back to the Table of Contents


THE PROJECT

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.

Defining Patient Activation

To define the concept of patient activation, the project team:

  • Reviewed published articles that discussed the skills and knowledge needed to manage a chronic illness successfully.
  • Formed a panel comprised of 21 experts to provide input on activation from a wide range of perspectives and gathered their input through a mail survey.
  • Conducted two focus groups with patients with chronic conditions.

Development and Testing of the Patient Activation Measure

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.

Methodology

Methodology included:

  • Face-to-face cognitive testing, self-administered Web-based and paper surveys, and a telephone survey of people with chronic illness to develop and test the questions.
  • Rasch analysis to determine the final 22 items and assess the instrument's reliability. (Rasch analysis is a statistical method of using scores from survey questions to characterize a person; it is useful in measuring knowledge or skills.)
  • Interviews with people with chronic conditions and review of these interviews by independent judges to assess the instrument's validity.
  • A national random telephone survey of people 45 year of age and older to gather baseline data and further assess the instrument's validity.

For details on the methodology, see Appendix 1.

Enhancements to the Patient Activation Measure

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:

  • Created software to use the PAM on handheld computers.
  • Created a low-literacy version of the PAM.
  • Began a study of barriers and facilitators to patient activation: This qualitative study, which was not part of the original project, involves 150 employees of the University of Oregon who have at least one chronic disease.

    The project team conducted in-depth interviews with selected respondents from each of the four stages of activation. As of September 2007, researchers were analyzing the data.

Related Grants

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:

  • Intervention Group: 244 patients participated in the Chronic Disease Self-Management Program, a six-week, interactive workshop (2.5 hours once a week) for people with different chronic conditions. For more information about the program, see Appendix 2.
  • Control Group: 235 patients.

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.

Communications

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.

 Back to the Table of Contents


RESULTS

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).

  • A definition of patient activation. People who are activated:
    • Believe patients have important roles to play in self-managing care, collaborating with providers and maintaining their health.
    • Know how to manage their condition, maintain functioning and prevent health declines.
    • Have the skills and behavioral repertoire to manage their condition, collaborate with their health providers, maintain their health functioning and access appropriate care.
  • Development and validation of the Patient Activation Measure (PAM), a survey instrument to assess patient self-reported knowledge, skill and confidence for self-managing health.

    Clinicians and researchers can use the PAM to design and evaluate interventions. Clinicians can assess individual patients and use the results to develop and implement tailored care plans.

    Researchers can use the measure to evaluate and compare the efficacy of interventions and health care delivery systems across populations, such as different demographic and health status groups.

    The PAM reflects four sequential stages of activation, beginning with the lowest level of activation:
    • Stage 1: Believing the patient role is important: At this stage, people do not yet grasp that they must play an active role in their own health and may believe they can be passive recipients of care.
    • Stage 2: Having the confidence and knowledge necessary to take action: At this stage, people may lack the basic facts about their health or not understand the facts or recommended health regimens.
    • Stage 3: Actually taking action to maintain and improve one's health: At this stage, people have the key facts and are beginning to take action but may lack confidence and skill to support new behaviors.
    • Stage 4: Staying the course even under stress: At this stage, people have adopted new behaviors but may not be able to maintain them in the face of life stress or health crises.
    The project team developed two versions of the PAM:
    • The original 22-item version that provides the highest level of precision.
    • A 13-item version that is easier to use in a doctor's office to inform patient care plans and in large-scale evaluations and surveys. According to the project director, the short version is preferable in most situations.
    Both versions measure the degree to which the patient agrees with each statement. The earlier items require the patient to have only the most basic knowledge about his/her care and condition (low activation), progressing to items that require staying the course even when under stress (highest activation).

    See Appendix 3 for the 13- and 22-item versions of the PAM.
  • Development of software to use the Patient Activation Measure on a handheld computer. Clinicians can use the software on touch screen handheld computers to quickly assess a patient's activation level during an office visit and print a report with the results.

    The project team planned to test the software in a separate project. See After the Grant for more information.
  • Development of a low-literacy version of the 13-item Patient Activation Measure. Project staff created a version of the measure with simpler and shorter wording.

    After testing this version with about 100 low-literacy patients at the University of Mississippi Medical Center, they found that the regular 13-item Patient Activation Measure was valid with people with low literacy, and more reliable than the low-literacy version.

 Back to the Table of Contents


FINDINGS

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:

Findings About the Reliability of the Patient Activation Measure

  • The high reliability of the Patient Activation Measure means that it is appropriate for individual-level use, such as designing a care plan for an individual patient.
  • The PAM performs well for people with a chronic condition and those with no chronic condition.
  • Measurement precision is stable across levels of health status, gender, different age groups and several chronic illnesses.

Findings About the Validity of the Patient Activation Measure

  • There is considerable evidence of the validity of the Patient Activation Measure:
    • Compared to people with low activation, people with higher activation:
      • Report significantly better health and have lower rates of doctor office visits, emergency room visits and nights in the hospital.
      • Are significantly more likely to exercise regularly, follow a low-fat diet, eat more fruits and vegetables and not smoke.
      • Are significantly more likely to engage in consumer-like health behaviors, such as finding out about a new provider's qualifications.
  • Self-management behaviors associated with specific conditions are significantly associated with activation levels. For example:
    • People with diabetes with higher activation were more likely to keep a blood sugar journal than those with lower activation.
    • People with arthritis with higher activation were more likely to exercise than those with lower activation.
    • People with high cholesterol with higher activation were more likely to follow a lot-fat diet than those with lower activation.
    • People with higher activation indicate a lower degree of fatalism about their health.

Findings About the 13-item Patient Activation Measure

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 13-item PAM has similar properties to the 22-item instrument.
  • The 13-item PAM has slightly lower reliability for some subgroups:
    • People with no chronic illness
    • People 85 years of age or older
    • People with self-rated poor health
    • People with lower income and education.

    There is some loss of precision with the shorter version; however, this version still falls within an acceptable range.

Findings from Related Grants

The project team reported the following findings in "Do Increases in Patient Activation Result in Improved Self-Management Behaviors?" Health Services Research, 2007:

  • Positive change in activation is related to positive change in many self-management behaviors.

    This is true even when the behavior is not being performed at baseline. When the behavior is being performed at baseline, an increase in activation is related to maintaining a relatively high level of behavior over time.

    The impact of the intervention (participating in the Chronic Disease Self-Management Program), however, was less clear, as the increase in activation in the intervention group was matched by nearly equal increases in the control group.
  • Depression plays a central role in activation and behavior. Participants with depressive symptoms were much less likely to become more activated and to improve their self-management behaviors than those without such symptoms.

 Back to the Table of Contents


CONCLUSIONS

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 Patient Activation Measure (PAM) appears to be a valid and reliable instrument to measure activation. The measure has strong psychometric properties and appears to tap into the developmental nature of activation. Because the measure is highly reliable at the person level, it is possible to use it on an individual patient basis to diagnose activation and individualize care plans. Moreover, because the measure maintains precision across different demographic and health status groups, it can also be used at the aggregate level to evaluate and compare the efficacy of interventions and health care delivery systems."
  • "Because the measure is developmental, interventions could be tailored to the individual's stage of activation. For example, those at early stages of activation would need interventions designed to increase knowledge about their condition and their treatments.

    "Patients at later stages would need interventions designed to increase their skills and confidence in the different self-management tasks. As patients advance in activation, the type of interventions that will be helpful to them will also change."
  • "The approach is economical because it is targeted rather than omnibus."
  • "Employers could also use the measure to assess interventions designed to increase engagement and activation among their employees."

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 shortened 13-item version of the PAM is both reliable and valid.

Conclusion from the Related Grant

The project team reported the following conclusion in "Do Increases in Patient Activation Result in Improved Self-Management Behaviors?" Health Services Research, 2007:

  • "Results suggest that if activation is increased, a variety of improved behaviors will follow. The question remains, however, as to what interventions will improve activation."

 Back to the Table of Contents


LESSONS LEARNED

  1. Publish findings widely to increase project visibility beyond academia. By publishing articles about the project in medical and health services journals, the project team reached clinicians. This helped make the Patient Activation Measure credible, which led to its increased visibility and use by clinicians. (Project Director)

 Back to the Table of Contents


AFTER THE GRANT

Uptake by the Field

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."

 Back to the Table of Contents


GRANT DETAILS & CONTACT INFORMATION

Project

Measuring Chronically Ill Consumers' Active Participation in Their Health Care

Grantee

University of Oregon (Eugene,  OR)

  • Conceptualizing and Measuring Activated Consumerism: A Prerequisite to Action
    Amount: $ 197,730
    Dates: June 2002 to September 2002
    ID#:  040162

Grantee

University of Oregon School of Architecture and Allied Arts (Eugene,  OR)

  • Measuring Chronically Ill Consumers' Active Participation in Their Health Care
    Amount: $ 257,245
    Dates: September 2002 to November 2004
    ID#:  045425

  • Further Development and Refinement of a Patient Activation Measure to Assess Consumers' Active Participation in Their Health Care
    Amount: $ 49,988
    Dates: June 2004 to May 2006
    ID#:  050787

Contact

Judith H. Hibbard, Dr.P.H.
(541) 346-3364
jhibbard@uoregon.edu

 Back to the Table of Contents


APPENDICES


Appendix 1

Methodology - Testing the Patient Activation Measure

  • To develop the survey instruments items, the project team conducted:
    • A cognitive study involving face-to-face interviews with 20 people with chronic diseases, from which they narrowed the items from the original pool of 80 to 75.
    • A pilot study of the 75 items conducted via telephone interviews. The study involved 100 people with chronic diseases, ages 19-79, recruited through newspaper advertisements. The research team applied Rasch analysis to the interview results to create a preliminary 21-item instrument.
  • To assess reliability of the instrument, the project team:
    • Examined the sample using Rasch analytical techniques.
    • Re-interviewed by telephone 30 of the participants from the pilot study, two weeks after the original study.
  • To assess validity of the instrument, the project team interviewed 10 participants from the pilot study and had three independent judges, blinded to the pilot scores, review and categorize transcripts of each interview.
  • To refine the instrument, the project team surveyed 486 people:
    • 120 heart rehabilitation patients, who completed a self-administered paper questionnaire.
    • 366 employees of a large health system, who completed a self-administered Web-based questionnaire.
    Because of this survey, the team added one item, for a total of 22 items.

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.


Appendix 2

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:

  • Techniques to deal with problems such as frustration, fatigue, pain and isolation.
  • Appropriate exercises for maintaining and improving strength, flexibility and endurance.
  • Appropriate use of medications.
  • Communicating effectively with family, friends and health professionals.
  • Nutrition.
  • How to evaluate new treatments.

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.


Appendix 3

The Patient Activation Measure: 13- and 22-Item Versions

Items in bold are not on the 13-item Patient Activation Measure.

  1. When all is said and done, I am the person who is responsible for managing my health condition.
  2. Taking an active role in my own health care is the most important factor in determining my health and ability to function.
  3. I know what each of my prescribed medications do.
  4. I am confident that I can tell my health care provider concerns I have even when he or she does not ask.
  5. I am confident that I can tell when I need to go get medical care and when I can handle a health problem myself.
  6. I know the lifestyle changes like diet and exercise that are recommended from a health condition.
  7. I am confident that I can follow through on medical treatments I need to do at home.
  8. I am confident that I can take actions that will help prevent or minimize some symptoms or problems associated with my health condition.
  9. I am confident that I can find trustworthy sources of information about my health condition and my health choices.
  10. I am confident that I can follow through on medical recommendations my health care provider makes such as changing my diet or doing regular exercise.
  11. I understand the nature and causes of my health condition(s).
  12. I know the different medical treatment options available for my health condition.
  13. I have been able to maintain the lifestyle changes for my health that I have made.
  14. I know how to prevent further problems with my health condition.
  15. I know about the self-treatments for my health condition.
  16. I have made the changes in my lifestyle like diet and exercise that are recommended for my health condition.
  17. I am confident I can figure out solutions when new situations or problems arise with my health condition.
  18. I am able to handle symptoms of my health condition on my own at home.
  19. I am confident I can tell my health care provider concerns I have even when he or she does not ask.
  20. I am able to handle problems of my health condition on my own at home.
  21. I am confident I can keep my health problems from interfering with the things I want to do.
  22. I am confident that I can maintain lifestyle changes like diet and exercise even during times of stress.

 Back to the Table of Contents


BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Book Chapters

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.

Articles

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): 1005–1026, 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): 1918–1930, 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): 1443–1463, 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): 2–8, 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): 379–394, 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): 21–29, 2007. Abstract available online.

Presentations and Testimony

"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.

 Back to the Table of Contents


Report prepared by: Robert Crum
Reviewed by: Lori De Milto
Reviewed by: Marian Bass
Program Officer: Robin E. Mockenhaupt
Program Officer: Anne F. Weiss

Most Requested