The doctor/patient relationship is certainly changing and evolving. A term I hear a lot today is: “patient engagement/activation.” Why is this concept so important and what does it mean? What can physician executives do to make it easier for our patients to become engaged and activated?
Judith Hibbard has pioneered the study of patient engagement, and she noted that one needs knowledge, skills, and emotional support to actively engage in one’s health care. She identified four behaviors associated with engagement and activation:
1. Self management
2. Collaboration with provider
3. Maintaining function/preventing declines
4. Access to appropriate and high quality care
She also developed a Patient Activation Measure (PAM) tool to place individual patients on a 4 level scale of engagement and activation. (1)
The Center for Advancing Health defines engagement as “actions individuals must take to obtain the greatest benefit from health care services available to them,” and they expanded Hibbard’s work by identifying 43 engagement behaviors that can be grouped into ten categories. (2) Patients who do not successfully engage in these behaviors will not receive optimal health care and will not realize all the benefits of the many scientific breakthroughs of 21st century medicine. Because of the economic environment, the increasing complexity of medical care, and health care reform, it is becoming more important for patients to take an active and knowledgeable role in their health care.
The ten categories of the Engagement Behavior Framework are:
1. Find safe, decent care.
2. Communicate with health care professionals
3. Organize health care
4. Pay for health care
5. Make good treatment decisions
6. Participate in treatment
7. Promote health
8. Get preventive health care
9. Plan for the end of life
10. Seek health knowledge (2)
Recently Klick Pharma invited 19 health care activists from a wide variety of disease states to participate in a conversation about an ePatient Bill of Rights that would support patient engagement and activation. After four hours of conversation, this group reached consensus on the following key messages of such a bill of rights:
1. Shared access to my data
2. Attitude of collaboration and overall respect
3. The patient is the largest stakeholder
4. Transparency and authenticity across all areas
5. Voice of the patient is a legitimate (clinical) source
6. The right to efficient communication with providers who utilize the technology we need (3)
It is not easy for any one patient to follow all of the above suggestions from the three different groups advocating patient engagement/activation. The Medicare Current Beneficiary Survey reported that only 30% of older Americans possess the motivation and skills to actively engage in their health care. (4) Hibbard found that 23% of those surveyed had embraced such behaviors in their health care, but they worried they would falter during a medical crisis. In her survey, 12% wanted to remain unengaged and 29% reported they did not have the knowledge to understand their treatment regimens. (5)
Researchers who have studied patient engagement/activation have found a positive relationship to health status outcomes. (6). Beatrice Golomb and colleagues found patients on statin drugs were far more likely than doctors to initiate discussions of symptoms possibly related to the drugs. (7) Annette O’Connor’s systematic review of the effects of shared decision-making technologies found a 23 percent reduction in surgical interventions among patients using them, with better functional status and satisfaction. (8)
David Mosen and colleagues documented that patients with high PAM scores were significantly more likely to perform self-management behaviors, use self-management services, and report high medication adherence. They were also ten times more likely to have high patient satisfaction scores and five times more likely to have high quality of life scores. (9)
Jessie Gruman has had cancer four times and is the founder and president of the Center for Advancing Health. Addressing an audience of health care providers, she recently said:
As a savvy and confident patient who is flummoxed by so much of what takes place in health care, I am regularly surprised by how little you know about how little we patients know. You are immersed in the health culture. But we don’t live in your world. So we have no idea what you are talking about much of the time. One way to help us feel competent in such unfamiliar environments is to give us some guidance about what this place is and how it works. What are the rules? (10)
Experts in patient activation/engagement suggest that hospitals and medical practices provide each patient with a short guide that explains how best to be a patient in that unique setting. Such a handbook could be printed, a smartphone app, an email, on a website, or a poster prominently displayed in the waiting room. It is important that patients understand how to get after-hours and emergency care, how to make appointments, what accommodations (physical navigation, translation services) are available, what insurance documents should be brought to the office visit, how to get prescription refills, and many other basic kinds of information that often frustrate even motivated individuals. (11)
Another tool that can be individualized for each clinical setting is a written contract or pact that clearly sets out the roles and expectations of all involved in the doctor/patient relationship. Components of such a document might include that patients should tell their provider about all other visits to physicians and alternative healers and that providers will ask about such care and be willing to share information. Another part of such a contract might require the patient to prepare for each visit by writing down a list of concerns and questions and the provider to respond to the patient’s questions and answer questions in a manner that the patient can readily understand. (11)
Another suggestion is that hospitals and medical practices become much more open to new technologies. Many patients find patient social networking sites such as PatientsLikeMe, DiabetesMine, Inspire, Disaboom, and IMedix valuable sources of practical information about living with chronic disease. CureTogether is exploring ways that patients can conduct observational research about their condition that is quite helpful to newly diagnosed patients. Patients are going to continue to google their symptoms and try to diagnose themselves before visiting the physician. Smartphone apps like CareCoach.com can help patients prepare for their visits by listening to actual patient/doctor conversations, recording their office visit so they can go back over instructions and physician advice, and sharing their audio health record of the visit with members of their care team who are unable to accompany the patient to the visit.
By providing guides, compacts, and information about new technologies, physician executives can send a powerful, positive message to their patients. Gruman believes such support communicates that we want our patients to be comfortable, to receive the best possible care, and that we are accountable for our services because we clearly spell out our commitments. (10) Physician executives should embrace patient engagement/activation because it will help our patients get better clinical outcomes and because it is the right thing to do.
1. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Developments of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 2004; 39: 1005-26.
4. Williams SS, Heller A. Patient activation among Medicare beneficiaries: segmentation to promote informed decision making. Int J Pharm and Healthcare Marketing 2007; 1: 199-213.
5. Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res 2007; 42:1443-63.
6. R.M. Epstein and R.L. Street, “Patient-Centered Care for the Twenty-first Century: Physicians’ Roles, Health Systems, and Patients’ Preferences” (Paper prepared for the ABIM Foundation Summer Forum: From Rhetoric to Reality: Achieving Patient-Centered Care, Yountville, California, July 2008)
7. B.A.Golombetal.,“PhysicianResponsetoPatientReportsofAdverseDrugEffects:ImplicationsforPatient-Targeted Adverse Effect Surveillance,” Drug Safety 30, no. 8 (2007): 669–675