On Becoming a Health Advocate

It has been more than 13 years since I was pregnant. However, now that I am working with a younger generation dealing with pregnancy at work, time off after the baby arrives, and figuring out how to balance life after returning, I am being exposed to the same challenges that I experienced so many years ago. Initially, as we were sitting around over a glass of wine (a measly 2 oz. for the breast feeding moms!), I was so happy I did not have to go through this again. Listening to stories about having to “instant message” during time in the “Mother’s” room made me remember the dread that came with trying to figure that all out for myself. Once was enough. Yet I appreciate that these challenges are not limited to just moms with babies trying to balance child care and work schedules. Many of us have parents or family that require more time and demand the same attention to balance our careers and home life. A sick family member who needs to be driven to appointments or needs some extra help around the house can require the same type of considerations. Maybe it is not even a family member, but a neighbor or a friend, who would benefit from an extra few hours set aside just for them, you just have to find the time. When you consider the “network” of care you are engaged in, you can quickly see that in reality, you are advocating for others in very formal and informal ways beyond what you might have realized.

My mother recently shared with me a story about her efforts to coordinate health services for my dad when he was sick this winter. He was admitted to the hospital, not once, but twice. Discharged, but then referred to a rehabilitation facility. It included plenty of new doctors and specialists at each facility that needed to review his health and case workers who sometimes knew his situation but more often did not. The story itself did not come without a surprisingly large number of “that’s just crazy” comments. (Honestly, it seemed as if random acts of health care occurred during this 3-5 week situation). We lamented at the end of our chat, that without an advocate, in this case my mom, who knows what might have happened. I started thinking and researching about the health advocacy services we have in our community and available to us to support this health advocacy. Because no one should ever have to think of healthcare as random.

What is health advocacy?

Health advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public.

I realize that by that definition, I am not very prepared to be anyone’s health advocate, perhaps not even my own. I prepared for becoming my child’s advocate because I read and learned as much as I could about what being a parent and a mother means. What in our many years of being family members, students, or employees prepares us for health advocacy? I would argue that our best preparation has come from sharing those “that’s just crazy” doctor visit stories. Very few of us have read significantly about other’s tales nor do we have experience beyond watching the current medical drama unfold on television. Technology is not very helpful here as I have lamented recently and while that is evolving, today we are left with information and healthcare knowledge gaps. That leaves us really unprepared for the health advocacy that is in our future, [(as a side note, if you have not read about Paul Kalanithi, I strongly encourage it as a good start to your knowledge journey!]

We will all have a role to play in the future of health advocacy. Just consider for a moment all of the advocacy you are already doing. Most of us probably have a pretty simple view, like figure 1. More and more of individuals are developing a more complex synthesis of interactions and concerns as our health care system evolves to one in which advocacy will have to play a bigger part. We have already talked about the need for Personal Health Record and the information needed. Advocacy though, goes beyond information in a PHR and helps us all drive access to the care needed and helps ensure the quality is there. Healthy individuals drive very little demand for advocacy in their journey because healthy people can take care of themselves and self-care is a primary focus. When a person’s health is not fine, their journey gets more complicated and interventions to drive specific outcomes ensure that advocacy increases in importance.

In a broad sense, health advocacy includes Patient Centered Care delivered through Patient Centered Medical Homes, Pregnancy Centering Programs, and care managers. All of these are impacting the healthcare landscape and are forcing the evolution of our healthcare system as a whole. Advocacy might come from a health insurer, a hospital, or clinical researchers, but there is no doubt you (or someone on your behalf) will be a part of that network. Regardless of the source, the intention is ACCESS and QUALITY CARE. That intention is best served by considering the patient journey and experience. Our US Healthcare systems are focused on those improvements and it wouldn’t be a good healthcare blog unless I mentioned that the Triple Aim.

Triple Aim is focused on”: Improving the patient experience of care (including quality and satisfaction); Improving the health of populations; and. Reducing the per-capita cost of health care. 

Preparing for health advocacy means you must ensure you have knowledge of how access works and learn what good care looks like. Frankly, you have to learn how to advocate for someone else besides yourself. Not an easy mission, but you have chances to support your family and friends every day. I would challenge readers to consider improving their advocacy skills and then take it to the next level by truly finding someone in your life you can advocate for. What have you done to advocate for the women and men in your organization who have found themselves struggling with balancing career and home? Can you think of at least one situation where you tried to help an individual with this struggle? Were you willing to go up against the “rules” in place or did you simply help them work within the confines? Ask your parent if you can join them for their next regular doctor visit. How satisfied are you that he/she has your parent's best intentions in mind as they talk to them or examine them? What do you do if you don't? Challenging ourselves to publicly support a cause is already something you have to do.

Do you have what it takes to be a good advocate? I think my daughter still does...