Patient-Centered Care

What Is Patient-Centered Care?

A patient is someone receiving medical treatment (Patient, 2012). There is probably little argument about this definition, but as we define patient-centered care there is a greater problem—one of perspective. Dr. Donald Berwick from the Institute on Health Care Improvement and, for a time, the administrator of the federal government’s Centers for Medicare and Medicaid Services, has defined patient centered as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” (Berwick, 2009, p. w560). This is an excellent definition from the view of a very humane and understanding physician but it is not patient centered. It does not take into account many of the things that patients want.

Patients’ desires for care have been investigated by the Change Foundation in Ontario, Canada. A major literature review by the Foundation confirmed that there is very little research that examines health care integration from the patient perspective (Spragins & Lorenzetti, 2008). The Foundation conducted a series of focus groups to get a better understanding of the patient experience (The Change Foundation, 2008). Many implicit definitions of the elements of patient-centered care emerged, among which were the following:

The International Association of Patient Organizations (IAPO) Declaration on Patient-Centered Health Care states that

the essence of patient-centered healthcare is that patients are at the centre of the healthcare system and therefore that the system is designed around them. The required outcome of healthcare is a better quality of health, and/or of life, as defined by the patient. (IAPO, 2007, p. 12)

The Declaration outlines five principles:

These principles promote greater patient empowerment, responsibility, and optimal usage by prioritizing patients’ needs and experience of health care in determining how care is delivered. This may be the only definition of patient-centered care defined by patients themselves. The IAPO (2007) document also includes an excellent literature review of this topic.

So why are definitions so important? Definitions determine how patient-centered care will be delivered. Here is an example. I recently had a questionable test result. In the week that followed, I saw or had contact with a nurse practitioner, a physician, and an oncology fellow, my primary care physician, another physician covering for my primary care physician, and two different people wanting to schedule appointments. I had numerous other tests, received two sets of detailed instructions and a welcome packet from our cancer center, signed informed consent documents, and underwent an invasive procedure. Using the Berwick definition, my health care team scored a solid C. There was transparency although little or no individuation, I was never given any choices, and while my dignity was not disrespected, it was generally, even if only benignly, ignored.

If we use the patient-derived definition, the score would probably be much lower. Of the five principles called for by the IAPO, my health care provider ignored choice, support, and empowerment; did poorly with information; was acceptable with regard to respect; and only did well with access. The point of this story is that if a service is to be patient centered, then both the health care system and the patient have to be involved in determining what this means. Each has its own view of meaning, and patient-centered care will never be achieved if patients are not part of the solution. The disability movement uses the phrase “Nothing about us without us” (Charlton, 1998). This certainly applies with something as central to health care as being patient centered.

Putting the Patient in Patient-Based Research in Health Education

Health education specialists have always prided themselves on formulating interventions based on the needs of the community, patient, and consumer. If this is true, it should be reflected in our literature. But it is not. In examining the 52 articles published in Health Education & Behavior in 2011, only three of the articles (less than 6%) dealt with patients with chronic conditions. Of these, none were clearly patient centered—that is, the patients themselves assisted in identifying patient-perceived problems and the formulation of the intervention. This is somewhat surprising as health education has long been a proponent of community-based participatory research. Thus, patient-based participatory research should not be much of a stretch for us.

Given this background, it would seem that health education as a profession would be in the perfect position to help the health care system achieve patient-centered care and empowered patients. However, with rare exceptions, unfortunately, health educators are not involved in these discussions. There are probably several reasons for this. First, clinical health care professionals—physicians, nurses, and therapists of all sorts—have little contact with, or knowledge about, health education. While they are taught to value patient education, they usually have little or no preparation or experience in behavioral science or health education. Second, at the same time health education as a profession has traditionally placed emphasis on public health and upstream primary and secondary prevention while largely ignoring tertiary prevention. By definition, a patient, while perhaps benefiting from primary and secondary prevention, is in definite need of tertiary prevention. Third, health educators also do not always agree with the approaches of other health professionals (especially physicians and nurses), lack education about disease and illness, and seldom practice in clinical settings. Finally, the health education profession has placed an emphasis on population health, policy, and, to some extent, environmental change, while deemphasizing individual behavior change.

What Can Health Education Offer?

So far I have talked about problems: (a) a mandate for patient-centered care without a clear definition of what this means; (b) clinical professionals without a strong background in behavioral science, behavioral change, or behavioral health; and (c) a profession, health education, with its focus on public participation but without strong emphasis on tertiary prevention. Nevertheless, health education has many things that it can bring to the table. These include getting patient input, preparing patients to serve on advisory and policy boards, helping to design and implement patient-centered care, and, finally, assisting in the evaluation of this care using patient-centered outcome measures. Let us examine each of these in a bit more depth.

“Nothing about us without us” is a great phrase but the reality is sometimes difficult. Patients and health care professionals come from different cultures. They speak different languages and neither really knows how to act when in the presence of the other except during the clinical encounter. Training of both groups can narrow this gap toward achieving patient-centered care. For health professionals, this involves listening, using common rather than professional language, and taking time and making an effort to elicit the patient’s perspective.

Patient engagement is a bit more complex. A framework for this was developed by Vancouver Costal Health, which has defined five levels of engagement, each requiring a different interface (Gauvin & Abelson, 2006; Vancouver Coastal Health, 2009). The lowest level is to inform patients—this means giving them objective information and helping them with choices. The next level is consulting; here patients are consulted to obtain feedback on alternatives or choices. The third level is involvement, where health professionals work directly with the public to be sure that hopes and concerns are understood and considered. The fourth level is collaboration, where patients and professionals are partners in all aspects of decision making and the selection of preferred solutions. The final level is empowerment, where the final decision making is in the hands of the public. As can be seen, each of these different levels requires different training. Moreover, it is important to note that not all patients prefer higher levels of engagement; the key is for the provider to elicit what the patient’s preferences are at the outset.

Health educators are experts at facilitating community participation and have the skills to design and implement training, especially for patients. They can also act, when necessary, as cultural interpreters between patients and health care providers and systems.

Health educators can also act as expert consultants and partners in the design of clinical services and behavioral interventions. Critical issues such as medication and treatment adherence, rehospitalization, overutilization, and missed appointments are largely behavioral. Many of the solutions can benefit from those who are experts in behavior change theory and practice. In addition, health educators can facilitate group visits, offer one-on-one or small-group behavior change counseling and follow-up on behavioral decisions made during the visit, and use patient portal and electronic medical records to assist patients with behavior change. Finally, they are in a position to link the clinical setting to community resources, which are now vastly underused by most health care providers.

Patient educators have long been in the forefront of patient-centered evaluation. One of their most important contributions has been to focus on outcomes that are important to patients as well as those that have clinical importance (Lorig et al., 1999). The recent work of Hibbard, Stockard, Mahoney, and Tusler (2004) has focused on defining and measuring patient activation.

Conclusion

The time for patient-centered care has come. Health educators have the knowledge and skills to move this agenda forward. However, there are some challenges to overcome. I would propose the following short, but not complete, list of potential solutions:

For the first time in modern history, we have a real chance to create meaningful and clinically relevant synergies at the intersection of Public Health Education and Medical Care, putting the patient at the center. All it takes is a slight change in perspective.