Do you ever feel like the health care system doesn’t focus on what you really need and want? The unfortunate truth is that physicians and researchers don’t often consider the patient perspective in decision-making – they’ve traditionally felt they knew what is most important in doing research and delivering care.
Fortunately, that is beginning to change.
In my role with WebMD, I get invited to the openings of a lot of health centers. Recently I was invited to the opening of a new cancer center in Northern Virginia, and I was thrilled to hear the director of the center explain that they came up with the concept for the physical structure of the building by talking to patients. That is something I had never heard before: Actually talking to patients about how they wanted their care delivered – and then changing decisions based on the feedback. Dr. John Deeken, President of the Inova Schar Cancer Institute, explained they put infusion centers on the top floor of the building because patients said they wanted to enjoy the views. Originally administrators thought the infusion centers should be on lower floors so patients would not have to travel far once they enter the building, but they shifted their thinking after getting input from patients. Instead of having TVs playing cable news in the community rooms, everyone gets their own iPad so they can watch what they want instead of listening to the political pundits. No flat screens around! The attention to detail wasn’t limited to warm color palettes and soothing music - patients had a voice even in the most practical aspects of the center. After hearing that patients were tired of constantly using hand sanitizers, the administrators placed small sinks throughout the facility.
Next time you go to a hospital check out the chairs. Usually they are the worst! Not at the center I visited – a group of patients tested out the chairs and chose the ones that were best to sit in for long periods of time. And when I saw a spa on one of the floors, I thought I must be hallucinating, but Dr. Deeken explained the institute provides free manicures and pedicures for patients and caregivers.
We are learning that the environment in which we provide care has a direct impact on outcomes. So providing comfortable chairs, soft music, and artwork is important and plays an important role. When we see a spa in a cancer center, it shows a recognition that caregiver burden – which is particularly significant in cancer care, impacts not only the caregiver but the patient.
Dr. Steven S. Grubbs, Vice President, Clinical Affairs at American Society of Clinical Oncology, believes that focusing on the total care of the patient – and the patient experience -- does lead to better outcomes. He pointed out that two of the greatest advancements in cancer care in recent years aren’t related to cancer drugs but actually addressing the early concerns of patients. “The anti-nausea drug, odanstetron, changed the trajectory of cancer drugs allowing patients to avoid some of the worst side effects of cancer drugs and better tolerate different dosing. The ability to place implantable venous access allowed more care to be delivered as outpatients.” These developments occurred by listening to the concerns of patients.
All of this got me thinking and asking questions. Is this a new trend or is it just window dressing? I called up my friend, Sung Poblete, PhD, RN, the CEO of Stand Up To Cancer, who explained. “I think society is beginning to realize that patient perspective has to be the hallmark of a collaboration model. At Stand Up To Cancer, we actually require research teams to include patient advocates to make sure research is prioritized and conducted with patients in mind." Dr. Poblete noted. “It’s how we will more effectively understand patient’s preferences and perspectives.”
So, what does all of this mean for the average patient? Obviously not every facility or practice takes this “total care” approach – but some do. If you are in the process of deciding where to go for treatment (and are in the position financially and geographically to be choosy), ask questions about their approach to patient, and caregiver, care and whether they have programs or processes that would make your treatment easier or less stressful. Choosing a center with a patient-focused approach could have a big impact on your overall treatment experience.
I remember during my training, many instructors would often ask, “Do patients want a doctor who is a great at diagnosing and treating disease, or someone who is nice?” Well, guess what? They’re not mutually exclusive. And thankfully, it looks like we’re at the cusp of a new trend in medical care that will treat the disease AND care for the person.