Real World Health Care Blog

Tag Archives: patient-centered care

Speaking Up: Let Patients Have a Say

One of the main tenets of patient-centered care is giving patients more control over their health and health decisions made on their behalf. Patients have a clear and important role in their own care through a concept called “patienthood” — the self-management behavior that ensures we either give to ourselves or get from others the care we need to manage our health risks and medical problems.

Linda Barlow

Linda Barlow

On the surface, patienthood seems like a simple concept: our body, our health, our decisions. What might be right for the patient next door may not be right for us. At one end of the spectrum, patienthood may involve strategies like eating right and exercising to avoid problems related to obesity. At the other end of the spectrum, it may involve saying “no” to certain suggested treatments, as I did when I opted not to have chemotherapy after my breast cancer operation.

According to a report from Kaiser Health News, in many hospitals and clinics around the country, health care professionals simply tell patients what treatments they should have, or at least give them strong recommendations. But at UC San Francisco, a formal process called “shared decision making” allows patients to work with doctors to make choices –regarding their care. The approach has become a model for other programs around the country.

The report mentions a stumbling block to this approach: many patients aren’t accustomed to speaking up. Even the most engaged or educated patients may defer to their doctors because they are scared, they don’t want to be seen as difficult or they think the doctor knows best.

Doctors who recognize this stumbling block may want to take a cue from one family doctor profiled in the Washington Post who, when faced with a medical conundrum involving an elderly patient, pushed aside talk of possible treatments and asked the patient a simple question: “What are your goals for care, and how can I help you?”

This particular patient wasn’t looking for a cure. He simply wanted to live out his remaining days at home without worrying about falling. So the doctor put together a hospice and physical therapy plan that let him do just that.

Patients speaking up. Doctors asking the right questions…and listening to the answers. Patients and doctors deciding together on a course of care or treatment. The concept of patient-centered care cannot be fully realized until everyone involved has a say.

Have you ever played a role in deciding on your own course of treatment? Or do you typically hesitate to speak up to your health care providers? Let us know in the comments section.

Are Patients Talking and Are Doctors Listening?

Rheumatologist Daniel J. Wallace, M.D., who has treated more than 2,000 people with lupus, holds what he calls a counseling session with each patient he diagnoses with the disease. As he writes in his book, The Lupus Book, he uses these sessions to educate patients about their illness and explain their treatment. This step, he writes, is essential to establishing a good long-term relationship with a new patient.

Mollie Katz

Mollie Katz

Dr. Wallace’s approach is an example of patient-centered care, a principle widely considered vital to quality health care.

The Institute of Medicine defines patient-centeredness as “care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences.”  The definition also includes providing patients with “the education and support they need to make decisions and participate in their own care.”

Barriers to Communication and Trust 

Because patient-centered care hinges on trust between patients and their doctors, many medical societies, patient advocacy groups and health care institutions have focused on ways to build trust. Their solutions always emphasize better communication, and physicians and other members of the health care team are taught to listen carefully and empathetically to patients.

Yet barriers to good communication persist.

Findings issued in February about multiple sclerosis (MS) care, for instance, have shown that both neurologists and patients can be hesitant to discuss important issues, even those central to MS.

The State of MS Report released by the State of MS Consortium found that in the U.S. and four western European countries, 19 percent of MS patients said they were uncomfortable talking about walking problems and tremors.

With more sensitive and private issues, patients expressed even more hesitation. Concerns about sexual difficulties left 54 percent of patients reluctant to talk to their doctors. Twenty-eight percent were uneasy discussing bowel and bladder problems, and 21 percent were uncomfortable discussing cognitive or memory issues.

In the study, physicians considered time pressures a barrier to good communication. Patients agreed, but said not wanting to be labelled “difficult” by their doctors was a bigger hurdle.  

Testing Improvements 

Researching ways to strengthen communication between health care providers and patients is a priority of the Patient Centered Outcomes Research Institute (PCORI), which funds research on patient-centered care. PCORI is a nonprofit, non-governmental body established by Congress as a provision of the Affordable Care Act.

One PCORI-funded study is testing whether involving patients in decisions about their treatment will improve their use of prescribed drugs. According to the researchers in Boston, nearly one-third of patients don’t fill new prescriptions.

Sometimes that’s because they disagree with their doctors on the need for medicines. Some patients fear the side effects or toxicity of a drug. Some have incorrect perceptions of effective care. Others lack social or financial support needed to follow prescribed treatment.

In the study, patients and providers will consider the available scientific evidence, as well as the patient’s values and preferences, and decide together on treatment.

Dr. Wallace, the lupus specialist, acknowledged in his book that physicians may harm their relationships with patients by acting too judgmental, intimidating and hard to approach, leaving patients afraid to discuss serious issues about their treatment. Patients, too, he says, can be challenging to work with when they hesitate to trust their doctors because they are hostile, anxious or depressed beyond the level that would typically be found in someone with lupus.

He urged patients to be unafraid to state their concerns clearly and to get a second opinion if they wish, knowing this should not imperil the relationship with the doctor. His description of a good doctor-patient relationship includes open communication, mutual honesty and respect and understanding of one another’s lifestyles and limitations.

“A patient’s relationship with his or her doctor is akin to a complex commitment,” he writes. “The doctor is half of the ticket to good health, and both sides have to put up with each other’s idiosyncrasies.”

Have you ever avoided difficult discussions with your physician about your care? Tell us why and how you were able to overcome the situation in the comments below.

Four benefits of electronic health records

Leaders from industry, academia, and health care discuss the rollout of this technology at The Atlantic’s sixth annual Health Care Forum

Today The Atlantic Health Care Forum brought together leading policymakers and industry experts in medicine, public health, and nutrition to have conversations about the state of the nation’s health care system. The event was sponsored by Siemens, Surescripts, WellPoint, GSK and PhRMA. Real World Health Care attended to share insights from the panel “Health Care Tomorrow: Examining the Tools and Technologies that Will Revolutionize the Future Health Care System.”

Jamie Elizabeth Rosen

Jamie Elizabeth Rosen

Much of the discussion centered around electronic health records, which are increasingly being rolled out in huge hospital systems after the federal government incentivized their adoption to the tune of billions of dollars five years ago. Four themes emerged from the panel, which included top executives from Johns Hopkins Medicine, athenahealth, PhRMA, and Carolinas HealthCare System.


1. Enhancing collaboration.

Electronic health records facilitate a team-based approach to hospital care, as well as allowing for better coordination between hospital systems. “What we’re going to see is it’s going to drive team-based clinical care because everyone in the system will have access to the same medical records,” said Dr. Paul Rothman, Dean of the Medical Faculty and Vice President for Medicine at The Johns Hopkins University and Chief Executive Officer at Johns Hopkins Medicine. “You’re going to see an [increased] level of collaboration not only between delivery systems, but also between the patient and the health care provider.”

However, Ed Park, Executive Vice President and Chief Operating Officer, athenahealth, warned that the decades-old technologies that many hospital systems are using are limited in their capabilities. “The current crop of [electronic health records] are documentation tools instead of care management tools,” he said, adding that they are primarily for use by insurers and lawyers. “What I fear is health systems beginning to buy their way into their own prisons that are built of their own IT…as opposed to dealing in an open environment,” he said.


2. Enabling patient-centered care.

Electronic health records enable patients to reap greater benefits from telehealth. “Having your information on your iPhone: that’s not far away,” Dr. Rothman said. “[Patients are] going to do EKG’s at home. They’re going to be measuring their blood sugar at home. The patient will have control of the data.”

Electronic records also hold the promise of helping to solve age-old problems in the U.S. health care system, including keeping contact with patients to encourage them to take prescribed treatment regimens. “There is almost $350 billion a year in inefficiency because of lack of compliance and adherence with medications,” said John Castellani, President and Chief Executive Officer, PhRMA. “If you could just get an improvement in whether patients take the medicines that are prescribed, you could capture this great savings.”

“You have kids who have kidney transplants, and you can give them reminders on Facebook that they have to take their medications,” Dr. Rothman added.


3. Targeting therapies for increased success.

Electronic medical records can help health care providers ensure that they prescribe the treatments most likely to work for their patients.

“What I think is the promise of electronic medical records is our ability to find subsets of diseases through the broad diseases we treat,” Dr. Rothman said. “Asthma isn’t one disease. Obesity isn’t one disease. Diabetes isn’t one disease. We are going to be able to find subsets of diseases and target therapies [that work]. That’s when you’re going to see efficiency and return on investment.”


4. Harnessing the power of big data.

Our health care system has already begun to see the benefits of ‘big data’ with examples such as the discovery of drug side effects and interactions through mining consumer web search data. “We have to use the technologies to bring down the cost of the drug discovery process,” Castellani said.

“Just taking care of the patient, we capture data,” said Dr. Roger Ray, Executive Vice President and Chief Medical Officer, Carolinas HealthCare System. “That allows us to know when a patient…may be at risk for hospital readmission. Having the ability to mine [data]…makes a difference for patients.

“We all, each of us, remember with longing a simpler time when we could scribble and walk off and our job was done,” he added. “What we know now is that’s not very good for the patient. We had no standardization allowing us to help patients avoid lots of different bad outcomes they could have.”


Have electronic medical records impacted your health or that of your patients? Share your thoughts in the comments section.