Patients Need to Show a Little Centricity Too!
"Being patient-centric means consumers have a place at the table with equitable say, as opposed to being a passive recipient with little influence over what happens."
The above quote came from my conversation with Jennifer Buttars from JaBC Strategies, talking about why patient-centricity is crucial to modern healthcare, where we are now, where we should be, and how to get there. It's an interesting story, and highlights one point so often overlooked in the patient discussion - patients have a responsibility to themselves to speak up and ask questions - a responsibility patients they're often unaware of.
"My mother passed away last year – she had pancreatic cancer. Chronic, long-term illness, it was a process, and in many ways it was fantastic. [The system worked] because I was able to draw on 25 years of experience of how the system works, how to talk to senior people, how to interact with people," Buttars shared her experience, stressing that while we’re often put in a box as a patient, we are in fact consumers of services.
“We pay for healthcare one way or another and we should have the right to make choices around healthcare, just as we do in other aspects of our lives."
Although advocating for one’s self when faced with illness is daunting, leaving many people feeling like victims, Buttars insists that there’s no other way to get what you need but to ask for it.
“What is it that you have on your agenda, Mom? What is it that you want to get out of this meeting? What are you feeling?”
"I experienced this with my mother. We would prep in the car on the way to the consultations. What is it that you have on your agenda, Mom? What is it that you want to get out of this meeting? What are you feeling? We'd go through what we thought the consult would be like, and she would say to me: 'I can talk, I can talk for myself, don't you talk for me Jennifer!’ She was afraid that if I pushed too hard it would somehow come back on her quality of care.”
Those fears, although common, are unsubstantiated as doctors need and expect their patients to speak up. They're the gatekeepers providing access to services that can ease a patient’s journey, yet people still find it challenging to talk about their needs and prospects. Buttars explains: “It's tough because people in healthcare speak a language that other people may or may not follow, especially the older generation. [Consumers] shut up, because they don't want to sound stupid or ignorant."
Stronger communication skills from the consumer (the patient) and the people in the system are key to changing the current situation. One possible solution would be providing healthcare professionals with on-going career development training aimed at teaching how to interact with consumers as well as how to check for feedback and for understanding. For patients, there is a need for a change in the curriculum that includes a module that informs people how the system works, what keeps us healthy, what doesn't, what we expect from consumers to keep the system healthy, and, more importantly, why they need this for their own sake.
"It's not scare tactics, it's just saying that you need to do those kinds of things just as you need to recycle your garbage and save for your retirement. Formal education will lead to an attitude change around how important it is that we do our part, leading to a change away from this passive attitude," Buttars explains.
Resistance to change
While many of us are frustrated with and irritated by our healthcare systems, which are neither efficient nor effective enough, we are at the same time resistant to changing the business model under which healthcare operates.
“Making informed health decisions doesn't require being an expert in healthcare, just as saving for retirement doesn't require being an expert in financial markets”
"We need to modernize regulations in a way that empowers the consumer/patient/caregiver to be ready when they have to interact with the system in terms of finances, knowledge, awareness how the system works. They need to know how to get the most out of their interaction with the system, what questions to ask so that [they] can make the most out of an exchange with their physician, and [as a result] make an informed decision.”
Making informed health decisions doesn't require being an expert in healthcare, just as saving for retirement doesn't require being an expert in financial markets. There was a time, however, when people in the financial industry thought that an average consumer would not be able to understand the complexity of the capital markets, so the governments and the banking sector said that they need to take care of the general population. "We all question that now, it's changed, and now there's an expectation that when you start your career you need to start planning for your retirement. That's what should happen with healthcare as well,” Buttars added.
Just as you can save up for your retirement, you can also save up for certain healthcare provisions. While taking care of the consequences of catastrophic events should remain in the domain financed by the public sector, there’s plenty of health services that consumers could choose to pay for through other means, e.g. disease prevention programs, or support services available to patients and their carers throughout their patient journey.
Are we there yet?
A system that provides care in a way that is respectful of and responsive to individual patient preferences, needs, and values, and that ensures that all clinical decisions are guided by patients is difficult to achieve and even more challenging to evaluate. How do you know you're patient-centric?
Buttars summed up: "At the end of the day, [the system is doing a good job if], regardless of the outcome, I, as a caregiver, feel that i had the best possible access to the services, that it was easy for me to get there, and that I'm confident that I didn't miss anything. It's normal to have a little bit of doubt, but if people are criticizing the system after they have been through it, then it's not patient-centric."