Why are patients integral to program design?

Barbara Balik, RN; IHI Senior Faculty, Common Fire Healthcare Consulting

When I posed that question to a patient faculty member, she had this stupefied look, and it was like, “How would you do it otherwise? Would you have a program if it weren’t for us?” The idea that we as health professionals would even think about designing a program without partnerships with patients is a stumbling block for patients and families and community members even to think about. They kind of assume we do already, and that should be embarrassing for us. So first and foremost, how could we do that and not include them?

Secondly, we’re so used to doing it ourselves that we forget what we missed when we’re not partnering with patients and families. A number of years ago, I put together a tool, a concept to help people assess their own culture, their own individual beliefs, and that of their organization, and what I used as a terminology: Are we doing “to,” are we doing “for,” or are we doing “with” patients and families?

Doing “to” is where we used to be. We set the rules. You can’t come to the hospital and visit; we’ll tell you what to eat. I issue you prescriptions and a plan, and you’re supposed to follow it, and that’s where language like “compliance” comes from, and we need to ban that term and that mindset completely.

Doing “for” is where we are a lot right now, which is, we think about patients, and we want to be good in creating good environments, so we’ll design it and then maybe later we might ask patients about it. So it’s like, “What do you think?” rather than having them with us at the table thinking about what are the needs, what makes for a great experience in a holistic way. What helps them improve their health and their health care? The whole idea of designing programs with patients is just the foundation of doing excellent programs.

The other thing from a practical, logical, not just doing the right thing, but the practical, logical perspective is that when organizations design without the presence of patients and families and community members, they tend to over-design. They get more stuff in the program than is actually needed. That leads to waste and expensive programs. They’re usually professionally and organizationally centered, not person-centered, and they often miss the mark as far as what patients and families and community members truly want. They miss what matters to them.

There’s a few good examples. Colleagues at a very esteemed integrated health care system designed about a year and a half ago a new infusion center for mainly oncology patients, but also others who needed infusions. They got through most of the design and then went, “Oh, we don’t have a patient or two or three or a family member,” and the patients and family members they engaged politely but firmly told them that they’d really missed the mark. They had designed and over-designed for the patient. It was a beautiful setting, but the patients said, “Where do my loved ones sit? I’m here for five, six, eight hours, and where do my loved ones sit? Where do they go when they need a break? Where do they get something to eat or drink?” And they had missed the mark on that. So they went back to the drawing board, and that was a big waste of design time, but what they got was a better design and a lower cost design. There’s examples like that every place, that people have stopped and started and stopped.