McKinney: What was your motivation for founding the National Association of Healthcare Advocacy Consultants, and has the organization lived up to the original goals so far?
Smith: My goal initially was to bring together this large community of people involved in healthcare advocacy and create a professional association that welcomes consumers, professional and lay advocates, people working on the policy and legislative approaches, bioethicists—everybody working in the field—into membership. And I also started it because I wanted to locate other people in the country doing the same work that I was doing. And, thirdly, I started it to start a professional association that would work on best practices and codes of ethics and consumer education and information. And I will say, in our 18 short months of existence, we have held two national conferences, created a code of ethics for the profession and launched a forum for members to exchange information. And for people that were not at those conferences, they can join back at www.nahac.com and download podcasts of all the workshops in the conferences we had. We've also just started a committee that is beginning to work on best practices for healthcare advocates, so I would say it is definitely living up to my expectations. It's a wonderful group of now 140 members nationwide.
McKinney: That's wonderful. Tell me about one particular memorable experience that you've had while advocating for a patient.
Smith: I have a 50-year-old woman that I first saw when she was in the hospital, and she was there because she had an infection and also a fracture of her left tibia that was going to require surgery. And she was a diabetic, she was blind, she had ulcers on both feet that weren't healing, history of breast cancer, just a very complicated medical situation. She was and is a very talented and knowledgeable woman with a degree in nutrition, and is usually very assertive for herself, but she was totally overwhelmed in the hospital. So the problems that she and her family hired me to work with were some that were going to be really familiar to your listeners. There were multiple physicians involved—five of them plus a hospitalist—and the communications were not really effective within the team. There were not sufficient accommodations to her because she was blind in this setting. And she needed help with management of her diabetes medication because her blood sugars in the hospital were just out of control. They were not where they should be, and the family wanted someone to help with the [unclear: 3:48] planning and communicating with them. So what I did was I acted as a liaison between and among the physicians, including the hospitalist, and acted initially as her voice in management of her diabetes medications and models for her of ways that she could become part of her own treatment planning. Models for the staff of how to successfully manage the diabetes medication and also communicate with someone who's blind because the accommodation they hooked up was just a little note at the top of her bed that said, ‘This patient is blind,' and it wasn't enough. It wasn't effective. So she'd had a system at home of managing her own diabetes medication. She knew which ones worked; she knew which ones didn't work. She just needed someone to help her articulate her voice in the hospital—that we could get her back on the medications that she knew really worked for her. I also acted as an advocate for her when she was eventually discharged to the nursing home and went into a rehab program there, and then was ready to go home before the discharge planner at the nursing home felt that it was optimal. But in her case, I really felt with home health setup and the support system that she had at home, for her, home was actually going to be a better setting. So I helped in arranging those kinds of services at home.
McKinney: I think that example illustrates how difficult it can be for a patient to manage their own care. Are you optimistic that in the future, the healthcare system can become less fragmented and perhaps less complex and that it could become easier for patients to navigate the system on their own without advocates?
Smith: I hope healthcare will become less complex and fragmented. However, I don't honestly think in the near term that's going to happen. So consumers are going to continue to have to find their way through quite a maze. Even if the recently passed healthcare reform changes do eventually smooth out things to some degree, reform also ushered in changes that consumers will need help in understanding. And in addition, if healthcare reform is repealed, or parts of it are, it's going to be even more confusing. So my goal is always to educate my clients so they can learn to navigate on their own while I stand in the background ready to step in if needed. That creates a truly informed and empowered client. But I think there are going to be some steps along the way to help people get to that point.
McKinney: Well, thank you, again, Joanna, for making time to speak with us. This is Maureen McKinney for Modern Healthcare.
