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What a Patient Advocate Wants You to Know About Co-Designing Care

By IHI Team | Thursday, August 25, 2022
What a Patient Advocate Wishes You Knew About Co-Designing Care
Photo by Massimo Sartirana | Unsplash

When her daughter was diagnosed with cystic fibrosis 18 years ago, Lindsay Deveaux was not familiar with the term “patient-centered care.” All she knew was that she appreciated when clinicians treated her with respect, welcomed her questions, and valued her role as an informed advocate for her child. Back then, she never expected she would one day be considered an expert on centering the voice of the patient in quality improvement, but that is exactly what she has become as a Family Partner for the Cystic Fibrosis Care Center at Doernbecher Children’s Hospital in Portland, Oregon. Deveaux was also a member of the expert panel contributing to the Institute for Healthcare Improvement (IHI) Telemedicine: Ensuring Safe, Equitable, Person-Centered Virtual Care white paper.

About eight years ago, when her daughter’s multidisciplinary care team started a new quality improvement (QI) initiative, they invited Deveaux to join them. “From the ground up, I was an embedded part of the quality improvement team,” she recalled. She was trained in QI alongside the other members of the team. She led meetings and learned how to create and understand the data they were collecting.

In the years since that first process started, Deveaux has become keenly aware that many patients and family members do not understand the importance of their voices as part of the care team and do not necessarily know the questions to ask or requests to make. Consequently, “I’ve wanted to make sure that I’m constantly challenging our [clinical] team to make sure that [the patient voice] is embedded into the care they are providing for every patient,” Deveaux noted.

In the following interview, Deveaux describes what else she wants care providers to know about co-designing care with patients and families.

On making partnering with patients the norm, not the exception

Well-rounded quality care cannot happen unless you, the provider, and the patient are working in partnership. The doctor is the expert in the field and the care, but the patient and the family are the experts in the execution. Unless you have both pieces put together, you’re never going to reach the best quality care that you can.

For example, one of the things we’re constantly trying to improve is attendance at appointments and being there on time. There are pieces of why a patient or family may not make it to their appointment that are not always fully understood. Whatever our next intervention is going to be, we’re including the patient and family from the ground up. This means doing more than “we’re going to do this thing and then ask you how it went.” Instead, it’s going to be, “we're going to build this thing together and then collect data and see how it goes.”

On the advantages of telemedicine

Imagine having to drive eight hours — the length of an average workday — to get the health care you need. If you then add the cost of an overnight stay and gas, it's not difficult to see why these kinds of barriers to care are so difficult for some patients and families to overcome. Fortunately, during the pandemic, telemedicine has allowed Doernbecher Children’s Hospital’s cystic fibrosis center to make care accessible to more patients. It’s not the same [as in-person care], but it can be beneficial for both the patients and providers. For example, cystic fibrosis patients require breathing treatments and use home medical equipment. While on camera during a virtual visit, patients can demonstrate how they hold their nebulizer, where they sit during treatments, or how their equipment fits. [Providers] can assess the care situation at home in a way that would not have been possible had it been an in-person visit.

I worry that this kind of flexibility and accessibility will go away as face-to-face visits become the norm again. We still have medical and insurance industries driven by billable hours, so I fear these [telemedicine] benefits and opportunities are going to be pulled back if more insurers reduce reimbursement for virtual visits.

On fully appreciating the challenges of telemedicine for patients

One of the silver linings of the pandemic has been the giant push to get on telemedicine. But when you really dive into it, it becomes evident that you’re asking patients and families to completely open up their world because they’re literally bringing you into their home. It’s why it’s so important to make sure the care you’re providing [during virtual visits] is safe, equitable, and patient-centered.

On her hopes for the future

Sometimes it’s kind of a slog and there are lots of barriers and roadblocks, but I can tell you that my daughter is going off to college this fall, and she has grown up watching me be this advocate. She has gone into her own care knowing that her voice is part of the process. She is embedded in her own care. Her self-actualization is so much more than it would’ve been without feeling like her voice is important. We have the potential to create more activated patients as care partners and that is only going to improve care for patients and ease of care for providers in the future.

Editor’s note: This interview has been edited for length and clarity.

You may also be interested in:

 IHI’s Telemedicine: Ensuring Safe, Equitable, Person-Centered Virtual Care white paper

What to Say During Telehealth Visits with Older Adults

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