There is a ton of talk these days about “patient-centricity,” “patient-focused care,” and “patient empowerment.” In fact, there are actually people (mostly not patients) at large organizations whose job it is to not only define these phrases, but also bring them to life and make it true for those who are managing health issues.
But perhaps I can save all of those smart people some time and energy.
I, along with my other patient peeps, know a lot of something about what it means to be centric; that is, as Oxford Dictionary defines it, “at the centre, or the focus of attention.” And well, we aren’t there yet. Not even close.
As someone living with leukemia, who has been deeply entrenched in the healthcare system my entire life through numerous serious family illnesses, it\’s not hard to put together an initial to-do list:
1. Lose the gowns. It is bad enough to have to hang out in a hospital waiting for a test. But those hospital gowns. Can someone clarify if they open at the front or the back? And, as anyone who has sat in a waiting room with other people wearing those gowns will tell you, that one little tie is not enough to hold it closed. No matter how small your butt is.
2. Fine-tune the post-test call back. Ok, people. Time to ditch the anxiety-provoking call from the doctor’s office after a test, telling you that you need to come in to the office, but, oh sorry, I-can’t-tell-you-a-single-thing-because-I-am-just-the-secretary-and-yes-I-realize-it’s-a-long-weekend-hope-you-have-a-good-one. Then you stress for three days only to find out all is well. Argh.
3. Boo on negative nellies. And what about the doctors and nurses who feel the need to provide a direct verbal download of what is going through their minds during an appointment. “Hmmmm … it is most likely indigestion, but of course, there are more sinister things like cancer, I just read this story about a rare tumour that can cause similar symptoms, but that has only been seen in Iceland, so you are probably ok, but then again…\”
4. Cheer up the front lines. I have visited more than my share of front desks. It is important to point out that there are many “front-deskers” who are awesome. The ones who take the time to come out from behind their desk and say hello to my dad who is in a wheelchair, or the ones who comment on how healthy I look and ask about my kids. When I say “cheer up” I am talking about the others. The ones who refuse to look away from their computer screen while I stand there, unacknowledged; the ones who roll their eyes when, after sitting for two hours, I ask nicely how much longer the wait is; the ones who get frustrated when they don’t understand someone’s accent. This lack of manners is particularly unacceptable in clinics that tend to see patients who are very ill. I get that you might be having a bad day, but please remember that the person standing in front of you is sick, and worried and oh, that medication that they need to live is going to cost them about five mortgage payments – and that’s just for one month. They don’t want to be there any more than you do.
5. Be open to challenge and change. Patients are the experts when it comes to determining what a system that focuses on them means. Sure, it’s the little things that can make a big difference, but for real change to happen we need to be free to challenge the status quo and voice our ideas for change. Case in point: a recent gastroscopy. No fun, for sure. Usually done with sedation, I chose to do the examination without; a little because I didn’t want to feel terrible for the rest of the day, but mostly because I didn’t want to feel like a patient (note that it’s not for everyone).
When I registered at the clinic, I had to do the robe thing (see#1), wearing just my underwear, woolly socks and winter boots. Then I was instructed to lie on a hospital bed until I was wheeled into the treatment room, even though I asked to walk there. Let’s be honest, it’s tough to have a voice – to feel empowered – when you’re in your underwear, woolly socks and boots. And sure, I get that maybe there are safety and liability reasons for this, but seriously, how come no one even had the conversation with me?
One great example of patient empowerment was underway at Toronto’s East General about eight years ago. My son was having his first ear surgery at six months, I requested that I be allowed to carry him to the operating room and place the mask with the anesthetic on his face. I felt that this would reduce his fear, as well as contribute to calm in the OR for the medical team. There was A LOT of debate between the surgeon (what about germs?) and my son’s treating doctor (what if you pass out?), but with support from a pediatric nurse who was trying to have such a protocol put in place, for that first surgery, I calmly carried him in his pyjamas, down a very long hall, and was able to sing to him as he fell asleep. It was amazing and it felt really good as a mom. The next surgery, we weren’t so fortunate. The image of my boy being pulled from my arms by a nurse, screaming for me as he was carried down that long hall still makes me sad. After the surgery, I asked the surgeon if he had to restrain my son to get the mask on, and he just shrugged.
The thing is, like the history of any successful business shows, just because it has always been done a certain way, doesn’t mean it is the right way. Nor is it the way that works for everyone. To make change takes courage, foresight and an ability to – gulp, sorry about the cliché – think outside of the box. Only then does true growth, and improvement happen.
That’s not to say that no one has noticed. There are small movements happening on the ground all over the world. Project Better Gown, for example, was a study done by HealthPartners Institute in Minnesota that linked hospital gown design to improved patient experience. The result was an overhaul of the traditional blue gown, replacing the open back with a colourful wrap-style, side-tie design, with snaps along the sleeves – a design that is now being used in several U.S. hospitals and clinics.
But how can we bring this kind of thinking to the masses?
In every health-related company’s glossy marketing materials, you can read about the importance of the patient voice and how critical it is that they be engaged. But do our voices really have an impact on direction? As a patient advocate, my colleagues and I are being invited to the table more often, but are we co-creators? Are we partners? Not really. Very often the things we are asked to provide feedback on are already half done, or worse, minutes away from being executed.
For a system to be truly patient-centric, the patient must be at the centre. Always. This system must be open to new ways of thinking, listening and willing and able to accommodate, within reason. To be fluid, and constantly changing, responding to patient and caregiver needs in ways that impact experiences and outcomes in powerful, and maybe unconventional ways.
The list above is not even close to complete, and should include shorter clinic wait times, lower hospital parking fees, psycho-social intervention for people receiving devastating diagnoses, and patient group involvement in the building of clinical trials and treatment access.
Need more ideas? For heaven’s sake, ask a patient.
Lisa Machado is a former financial journalist who, after being diagnosed with a rare leukemia in 2008, now writes about the patient experience, and the challenges of living with a serious illness. She is the founder of the Canadian CML Network, and the author of the award-winning \”Living Well with CML: What you need to know to live your best life with Chronic Myelogenous Leukemia.” She will be continuing the discussion on what it means to be patient-centric at Canada Talks Pharma 2017.