We hear inspiring things about patient engagement. The very concept has a hearty, spirited, “do-right” sound to it.
- Engaged patients should believe the treatment they are getting is right.
- They should feel a strong commitment and trust in the doctor(s) and treatment centers where they receive care.
- They should believe that what they are doing is meaningful.
- And they should be willing to do whatever it takes to get better or survive.
After two years of cancer treatment, I think patient engagement should mirror those fundamental principles.
All these ideas resonated with me.
So with happy naïveté I read about patient engagement. Like Alice, I quickly found myself falling down the rabbit hole. The amount of information, research data, survey results, and input from different stakeholders was mind-boggling. Definitions from every level of health care ecosystem reflect the need for health literacy, shared decision making, quality improvement, electronic health records, disease management, and a host of other approaches.
Everything I read was critically important. There should be an expectation of quality, safety, skill and ethics, supported by efficient, effective systems and tools. To complicate matters, patient populations, like employee populations, are diverse and cover a huge range of care. There are also issues of compliance, financial resources, privacy, and inexperience in finding tools and information.
Suddenly, I felt like a tiny piece in a huge jigsaw puzzle that still doesn’t have all the border pieces. But just like in real life, there were a few little things that brought me from 30,000 feet to ground zero. It started with a visit to my oncologist’s office yesterday.
As I approached the entrance I read the sign that asks visitors to refrain from wearing perfume because many patients are sensitive to fragrances. I smiled. If you’ve ever been a chemo patient trapped in an elevator with a cologne-drenched, three-cheese pizza delivery person, you would understand. Small move but, oh boy, was this sign patient-centered.
As I entered the infusion room, I said cheerfully to the nurse, “We may have an issue today.” I was referring to a recent problem with one of my medications. My primary care doctor had adjusted the dose through his practice’s call-the-nurse process, and I worried that the cancer practice hadn’t been informed. But alerting the chemo nurse wasn’t necessary. She had read my chart the day before and knew exactly what was going on. My record was up to date and my doctors were in sync.
During my session, a patient arrived in pain. The nurse gently reassured her that all would be fine and then explained to her companion how to help.
I met another patient, there with her husband, who was facing an unpleasant hospital visit. The doctor had asked them to come in to talk about it before she was admitted. It reminded me of a Sunday afternoon two years ago when the doctor called me at home to detail what might happen in my surgery the next day. For a few moments in time, I understood what it was to be patient-centered.
When I left my oncologist’s office yesterday, I had a printed schedule of my lab work, my next treatment dates, an imaging appointment, and my follow up. My PET/CT was coordinated with the hospital outpatient facility and I knew that my insurance coverage had been verified. And if I happen to forget the prep instructions (which I often do) I know where I can find them on-line. My lab tests are sent electronically and I can schedule appointments on my iPad.
To developers of patient engagement systems, these things may seem like basic no-brainers. But to the patient, especially with a long term illness, they are not. They are critical to the patient’s ability to manage his care. They give us confidence that our care is on the right track; that we must be willing to do our part, including discretionary efforts; that we have a reason to be committed to the doctors and clinical professionals who help us through it; and it is meaningful for us to do it.Not everyone has good health coverage, open-minded doctors, and a network of “go-to” professionals. I pity the person who does not, because it would make a difficult situation all but impossible. Fortunately, I do have those things and I still get tangled up sometimes.
The challenges for the developers of “patient-centered” engagement programs include the enormous financial issues associated with being sick, making easily understandable information accessible, finding practical methods of patient buy-in, and getting doctors, hospitals, health plans and technology to seamlessly collaborate. Or said another way, when a patient walks through the door, will he have some answers to that old tried and true question, “what’s in it for me?”
Alice said it well. “It would be so nice if something would make sense for a change.”