The Digital Age and the Doctor/Patient Relationship

The digital age has had a deep and likely permanent effect on the patient-physician relationship. I can’t tell you how many times I’ve had physicians beg me to provide them with a way to stop their patients from Googling their symptoms and diagnosing themselves before their first office visit and much to their chagrin, my answer is always the same, “You can’t stop them. Get over it.”

The internet acts as an enormous and easily accessible virtual research library for patients, granting them access on the one hand to quality, data-driven information and personal perspectives that can provide tremendous value and on the other hand to information that is no better than old-fashioned quackery.

But this access to information has not translated into improved interactions between patients and their physicians. It is clear to me that we all need help in rethinking how we can best work together, especially because I believe that we are still in the nascent stages of this age of disruptive new tools that delight some and threaten others. Time and time again I hear stories describing the ways in which this technology seems to be moving us backward instead of ahead:

· When Timothy B. Lee went to a dentist highly recommended on Yelp, he was asked to sign a “mutual privacy agreement” that would transfer ownership of any public commentary he might make in the future to the dentist.

· A TechDirt blog post reported that plastic surgeons have sued patients for their online negative reviews and a neurologist sued the son of a stroke victim for negative comments about the physician’s bedside manner.

Instead of pitting patient against doctor, these tools should be increasing our collaboration.

The days of the paternalistic family doctor who dispenses advice and counsel to an acquiescent, unquestioning patient are clearly over, but that needn’t be a bad thing.

Importantly, this issue features prominently in the new proposed CMS rules for accountable care organizations (ACOs) under the Affordable Care Act. An ACO is a network of doctors and hospitals that share responsibility for providing care to patients. ACOs play an important role in healthcare reform because they are intended to make providers jointly accountable for the health of their patients, providing them with strong incentives to cooperate and save money by avoiding unnecessary tests and procedures. While the focus of ACOs is collaboration at the provider level, the end game is all about the patient and increasing the quality of his or her healthcare experience.

In order for ACOs to qualify for shared savings, they must provide patient-centered care that is influenced by the patient autonomy movement. Before becoming CMS Administrator, Don Berwick wrote a provocative article in Health Affairs calling for a new definition of patient centered care as “the experience… of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.”

In order to facilitate this shift, we need to resolve the current tension between the philosophy that idealizes the physician as always being right and patients’ newfound autonomy and access to information. We need to engage in a thoughtful discussion about how the new disruptive digital technologies can help both patients and physicians get what they need. After all, both have the same ultimate goals: good clinical outcomes and a meaningful relationship.

The good news is that these disruptive technologies can be the very mechanism we need to develop more accountable, quality-driven healthcare delivery systems because they can address some of the significant gaps in patient-physician communications that are so detrimental to the relationship. The Consumer Reports National Research Center conducted patient and provider surveys about the doctor/patient relationship and concluded that patients would get more from doctor office visits if they planned ahead, took notes during the appointments, and conducted careful online research for information. Other studies have shown that patients remember only about half of what physicians tell them during their visit and that 90 percent of patients receiving a new medication reported their physician never described the drug’s side effects. Perhaps most disturbing of all, more than 30 percent of patients were unable to name their diagnosis after being discharged.

Technology, far from being the villainous entities that so many care providers see, can actually improve a patient’s experience and address those disturbing statistics. Websites now provide patients with the tools to prepare for upcoming visits by listening to actual conversations between providers and patients that have the same diagnosis; they can organize their questions before the visit; they can record their visit using digital or mobile recording devices; and they can review the recording after the visit with caregivers and family members to better understand how they can partner with their physician’s advice.

For disruptive solutions to be successful, all of us must be willing to adapt the traditional doctor-patient relationship. Patients and physicians alike are confused and disoriented by the new digital world, even while being empowered by the knowledge they can impart. These cutting edge technologies have the potential to dramatically improve a patient’s healthcare experience, but to get there, we first have to engage in some good old fashioned talk.

Physician Executives Should Support Patient Engagement/Activation

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 21^st 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.

References:

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.

2. http://www.cfah.org/pdfs/CFAH_Engagement_Behavior_Framework_2010.pdf

3. http://www.klick.com/pharma/blog/2011/09/epatient-bill-of-rights/

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

8. http://content.healthaffairs.org/content/28/4/w555.abstract

9. http://myweb.facstaff.wwu.edu/knecht/Lectures/Stepping%20stone%20readings/Activation.outcome.pdf

10. http://e-patients.net/archives/2011/06/jessie-gruman-at-icsi.html

11. http://www.cfah.org/pdfs/CFAH_PACT_Special_2010.pdf