professions as a mechanism to achieve them. In the context of increasing complexity of care, narrower definitions of professionalism may actually undermine quality and safety by distracting clinicians from the need to collaborate effectively across professions.
Interprofessional professionalism, in contrast, promotes effective collaboration and communication—fundamental requirements for the delivery of safe, high-quality patient/client/family-centered care in contemporary practice settings.
Concluding Comments
The interprofessional professionalism concept is ripe for development. The IPC plans to develop a tool kit including teaching materials, assessments based on observable behaviors that are targeted at the level of entry into the health professions, and links to other resources. We welcome research and collaboration to further refine the interprofessional professionalism concept and integrate it with national and international health policy initiatives and competency frameworks.
Barbara L. Kornblau, J.D., OTR
Society for Participatory Medicine
Coalition for Disability Health Equity
Florida A&M University
“Where’s the patient?” This is the first question one asks upon reflection of the experts’ presentations at the Institute of Medicine (IOM) workshop Establishing Transdisciplinary Professionalism for Health. Presenters put much thought and analysis into the roles professionals play in “collaborative care,” “interprofessionalism professionalism,” “transdisciplinary practice,” and related themes. However, the patient’s role, perspective, and very being was notably absent from the discussions as they progressed through the day, while a concerted effort was made to include questions from students.
Patients need to be a part of the iterative process because they are stakeholders in the process. In fact, several laws, regulations, and policies guarantee this role for patients. For example, under federal law, the governing boards of federally qualified health centers (FQHCs) must be consumer-driven, with at least 51 percent of members coming from consumers of the
FQHC.4 Under the Patient Protection and Affordable Care Act, for a hospital to maintain its tax-exempt status, it must conduct community health needs assessments, and the assessments must include members of medically underserved populations or patients.5
Patients are integral members of the transdisciplinary health care team—not an afterthought. Health professionals of all flavors and students in all fields should be taught participatory medicine as the standard of care. Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners (E-Patient Dave, 2013). Participatory medicine supports the notion that listening to another professional or caregiver’s opinion of the patient is not as valuable as the firsthand information one obtains from most reliable source of that information—the patient (or the caregiver when the patient is unable to convey the information).
When patients become the drivers of their health care, they are responsible for becoming “e-patients.” E-patients are patients who are equipped, enabled, empowered, and engaged in their health and health care decisions (Ferguson, 2007). The patient–provider relationship becomes an equal partnership between e-patients and health providers and the systems that support them (Ferguson, 2007). Angelina Jolie is a recent example of a famous e-patient. When faced with a high probability of developing breast cancer as a result of her BRCA gene status, she became equipped, enabled, empowered, and engaged in her health and health care decision making. Armed with knowledge, she made the decision to have a prophylactic double mastectomy (Jolie, 2013).
Tom Ferguson was the thought leader who developed the concepts of participatory medicine and the e-patient movement together with the E-patient Scholars Working Group after Ferguson lost his battle with cancer (Ferguson, 2007). In 2001, in its groundbreaking report Crossing the Quality Chasm: A New Health System for the 21st Century, the IOM listed “patient-centeredness” as one of six key needs to improve the quality of health care in the United States (IOM, 2001). The IOM defined patient-centeredness as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). Ferguson put that concept of patient-centeredness on steroids, moving from respect and responsiveness to patient’s values to respect for the patient’s role as an equal member of the team.
The Center for Advancing Health defines patient engagement as “actions individuals must take to obtain the greatest benefit from the health care services available to them” (Center for Advancing Health, 2010, p. 2).
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4 Public Health Service Act § 330, 2010.
5 Affordable Care Act § 9007, 2010.
Evidence shows that patient engagement improves health outcomes, lowers costs, improves patient care, and decreases medical errors (Center for Advancing Health, 2010; James, 2013). Evidence also shows that patients with chronic conditions who are engaged in their health care are more likely to adhere to treatment regimens (James, 2013). The cumulative findings are so striking that Kish has called engaged patients “the blockbuster drug of the 21st century.” However, “engagement does not mean compliance” (Gruman, 2011).
My Story
I am an e-patient. I am equipped, enabled, empowered, and engaged in my health and health care decisions (Ferguson, 2007). With two chronic conditions almost no one has ever heard of, I have had to become an expert in my conditions. I even became a certified pain educator so I would be knowledgeable about my conditions. I frequently consult with Dr. Google and Dr. Twitter. I rely on social media to learn about and share information about my conditions. On one social media site, I network with more than 8,000 people worldwide who also have one of my conditions. From this group, I learn about the latest research and treatment for my condition. I often share this information with my health care providers.
I read blogs by people who blog about pain issues and general patient advocacy issues,6 and I follow people on Twitter who tweet about these issues as well.7 I also follow Pinterest for books about patient advocacy issues written by members of the Society for Participatory Medicine.8
I take my medical records with me to my medical appointments. I explain my two chronic conditions to the providers, and leave them copies of published research or information I obtained online. I also bring a copy of my genetic metabolite testing with me. With this in hand, when I tell providers that I can only take one particular pain medication, I can assure them that my request is not drug-seeking behavior but an evidence-based decision. Often, this occurs after I explain genetic metabolites and genetic metabolite testing to the provider. As an e-patient, I play a significant role in the transdisciplinary team that treats me.
I am also a caregiver. My 93-year-old mother has been diagnosed with terminal lung cancer 5 times during the past 12 years. However, in reality, she has never had cancer at all. My mother was in the Army in World War II. She was stationed where prisoners of war arrived from Europe.
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6 See, e.g., http://www.cfah.org/blog and http://www.painaction.com.
7 See, e.g., http://twitter.com/PainResource and http://pinterest.com/s4pm/blogs-written-by-s4pm-members.
8 See http://pinterest.com/s4pm/books-written-by-s4pm-members.
The prisoners were not in the best of health when they arrived. On many occasions, they lined everyone up and gave them the “inoculation du jour.” During this process, my mother was exposed to tuberculosis (TB). She never knew she actually had TB, but the evidence remains in my mother’s lungs—encapsulated TB.
Every time my mother sees a new doctor and/or has a chest X-ray, the doctor informs her that she has terminal lung cancer. Why? The reason is simple. None of the doctors who have diagnosed her cancer accepts caregivers as part of the transdisciplinary team. If other team members do not consult caregivers and respect them as members of the transdisciplinary team, they will not have the proper history and other information necessary to properly diagnose and treat the patient.
As a caregiver, I keep 12 years’ worth of imaging with me and a carefully prepared history of my mother’s health conditions. I have had to beg radiologists to compare my mother’s current imaging film to previous ones or simply read the previous reports—something one would think is pretty obvious in light of her history. Like other patients learn, I have learned that the existence of an electronic health record is no guarantee that it will be read.
I have had many arguments with physicians who wanted to biopsy the “tumor” (and expose my mother to active TB), remove her lung (at 85+ years old with a pacemaker), or put her in hospice with a diagnosis of terminal lung cancer (which she does not have). Without a caregiver on the transdisciplinary team, my mother would have died from one of the good-intentioned physicians’ treatment plans, based on these repeated absurd diagnoses. As I tried to explain to a misdiagnosing physician on one occasion, “with a doubling rate of 3 months, if my mother had this alleged lung cancer tumor the first time she was incorrectly diagnosed by a physician who would not listen to me recite my mother’s history, her tumor would be the size of the entire state of Florida by now.” As a caregiver, I play a key role in the transdisciplinary team that treats my mother.
What Does “Transdisciplinary” Mean to Patients?
So what does “transdisciplinary” mean to patients? Patients see many providers who do not talk to one another. Efforts to seek transdisciplinary teams puzzle patients when we cannot get one provider to talk to another provider in the same profession. Patients cannot get providers to read their histories. Further, patients see more of a transdisciplinary team than the presenters at the IOM workshop reflected. The presenters were mostly physicians, and reality today includes primary care providers who are nurse practitioners and physician assistants, plus many other providers who are on the team. Patients spend more time with occupational and physical therapists, speech pathologists, and providers other than physicians.
Several presenters spoke of the social contract as a contract with “society” or a contract with “the public.” Patients view the social contract as a contract with patients—as a duty owed directly to them as patients, as opposed to society or the public as a whole. Health care is personal. Public health is a contract with society.
Several presenters raised the issue of professionalism as behaviors versus beliefs. Patients see professionalism as behaviors. Although these may be the outcomes of behaviors based on one’s beliefs, patients are concerned with the outcome—the behaviors. How is the health care provider treating me?
Speakers stressed professional autonomy as an issue within the context of the social contact and the development of a transdisciplinary team. However, no one mentioned patient autonomy as a key principle. Patients want to make decisions about their own care. Patients want a transdisciplinary team that empowers them and allows them autonomy.
Patients want ethical behavior from all team members. As the Tuskegee syphilis experiments caused mistrust of the medical establishment among African Americans due to ethical breaches, Rebecca Skloot’s recent best-seller The Immortal Life of Henrietta Lacks may reinforce that distrust among a broader audience (McCallum et al., 2006). Providers should be prepared to discuss these issues with patients, especially if they are involved in research.
So, what else do patients want? Patients want respect. They want to be part of the transdisciplinary team. They want a role in decision making. They want health care providers to listen to them. Patients want information. In fact, there is a movement on Twitter with its own hashtag, #GMDD, which stands for “Gimme My Damn Data.” Some of the #GMDD followers are patients with implanted devices that transmit data to which they have no access (Campos, 2012).
Patients want explanations in language they can understand. Patients do not understand terms like “magnet hospital” or “interprofessional professionalism.” Patients want the privacy to which they are legally entitled. Patients who are individuals with disabilities prefer to be referred to as “people,” or “individuals” rather than “patients.” Patients want providers to consider context in treating them. What is their home environment? Do they have transportation to get to the provider to whom you referred them? How do they communicate?
Patients want a seat at the table, board, and committee—whether that is a hospital or academic program. As e-patient Dave stresses, “let the patient help” (E-Patient Dave, 2013). Patients can help with diagnoses by providing their history to providers and team members willing to listen to them. Patients can help with medical education. Allow patients with real ailments, disabilities, or chronic conditions to serve as the “subject” or “patient” in history and physical classes as a “real patient” instead of a paid actor.
Some speakers spoke of the problem of finding patients to help improve health care or participate in research. The answer to this is simple—patients are ubiquitous. Patients are found in waiting rooms. They are community leaders. Hospitals, university health centers, and others are all familiar with their “frequent fliers.” FQHCs are a good source for patients because their boards much come from 51 percent of the consumers they serve—patients. Providers and institutions that want input from patients can also find them in online communities, through social networking sites such as Twitter, PatientsLikeMe.com, Inspire.com, groups.yahoo.com, Facebook, and others. One also can contact disease- or chronic condition–specific groups such as the Multiple Sclerosis Society. The Society for Participatory Medicine also makes connections between its patient members and health systems, universities, app and device developers, and others.9
Final Thoughts
I often hear “disability” used in the context of a bad outcome. Disability is not a bad outcome or result. For many people with disabilities and chronic conditions, it is a way of life. Health care providers need to understand that ethically and legally, people with disabilities and chronic conditions are entitled to be treated like everyone else.
The World Health Organization measures health in terms of participation. Transdisciplinary team members should consider this. What do the patients do? Do they participate in the life and rhythm of their communities? What would they like to do? A provider’s desired outcome is not necessarily the patient’s desired outcome. How can the transdisciplinary team, which includes the patient, facilitate participation?
Another way of looking at the social contract from a patient perspective is to understand that the social contract facilitates the quality of life of individual patients. Quality of life is a measure of participation or occupational autonomy—the ability to do what you want to do when you want to do it (Kornblau, 2006). As a member of the transdisciplinary team, individuals or patients can inform the team members of their goals and desires, and the social contract helps them achieve their goal.
The bottom line is that individuals, whom the medical model refers to as “patients,” are not bystanders in their care. The evidence shows that engaged patients improve their care, decrease medical errors, and, as part of the transdisciplinary team, can help to improve health care. The most important thing for members of the transdisciplinary team to remember is that patients matter.
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