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Empowering Patients Is More Than Engagement

Don S. Dizon, MD, FACP

24 Apr 2014 9:06 AM

I was invited to participate in the 2014 Rev Forum, a “big-tent” type of event sponsored by LiveSTRONG and Genentech, and featuring the participation of ASCO’s Conquer Cancer Foundation, who had extended the invitation to me. The Rev Forum brings together a diverse group of participants—from clinicians, to policymakers, artists, advocates, and most importantly, patients, to rethink cancer care. As I considered what issues we could address, one thought was first and foremost in my mind: how to engage and empower more patients in these types of discussion.

In the business community, distinctions are clearly made between engagement and empowerment. Engagement reflects one’s understanding of purpose and mission, and the shared commitment from all involved to seeing an organizational goal accomplished. In contrast, empowerment refers to the ability to do what one wants and/or feels necessary to accomplish a task. The best way to realize a mission or achieve a goal is to be both engaged and empowered.

As a clinician, I want my patients engaged. It is important to me that they understand their diagnosis, prognosis, and the treatments they are being asked to take. I want them to feel invested in their therapy and to understand their side effects and how they will be monitored. When my patients are engaged, I see myself as a partner in their care. Their treatment becomes a shared responsibility and the doctor-patient relationship is one of equals. To me, patient engagement lies at the heart of ethics in medicine and informed consent. Indeed, it is a reflection of good patient care.

I have also assumed that all engaged patients are empowered. But after considering the business perspective, I wondered whether it is possible to empower even the most engaged patient affected by cancer? After all, cancer is scary, treatments are scary, and life after cancer can be scary, too. Someone once described it to me as “staring into the abyss—not knowing what would happen, or what was on the other side.” Another saw it as a near out-of-body experience that “felt like it was happening to someone else, not to me.” Even years later, sitting across from me and cancer-free, a particular patient still had that “deer in the headlights” look, waiting to exhale until I told her, “you look fine.”

The issue of patient empowerment becomes even more relevant when one considers the rapid advances in cancer therapy. As we move toward precision medicine, a new lexicon born out of molecular biology is finding its way into clinic, and even the most seasoned general oncologist admits to trouble keeping up with it all. Each drug has a difficult name to pronounce, and the pathway targeted requires a PhD to fully comprehend. Given the technical language required to explain newer agents and molecular targets, how can the engaged patient gain a grasp on the literature sufficiently to feel empowered?

Although I do not have the answers, I believe it must be possible. We should be able to foster our patients’ engagement in their own care more effectively, and we should be able to empower them in the important questions we face today, about targeted treatments, financial issues, and care guidelines, to name a few. To do so requires our encouragement, and it requires greater access to information for everyone.

And I think patients can do it. I have seen many patients overcome the fear and emerge from the cancer abyss. I have met so many who discovered new lives after cancer, buoyed by a strength they did not know they had. They serve as advocates on advisory committees within cancer centers, volunteers for those newly diagnosed, and take part in cancer awareness events in their own communities. This is empowerment. After cancer. As one saying goes: “Strength does not come from what you can do. Strength comes from overcoming the things you thought you couldn’t.”

So, what concrete steps do we need to take to help? How can we harness the momentum of so many? More importantly, what can we do to help people not just survive cancer, but to borrow from the author Felicia Marie Knaul, how can we help them thrive after cancer?

I believe the Rev Forum presents a unique opportunity to discuss these and other issues as we face the future, and I appreciate that it is occurring outside of the hallowed halls of research institutes, cancer centers, and professional societies. We must reach across the cancer continuum and not only hear from, but listen to, those with different perspectives from our own, learn from different experiences, and explore novel pathways beyond those involving cancer-cell signaling and angiogenesis.

If you would like to be a part of Rev, you can learn more and apply here: www.rev-forum.com. Let’s #DreamBig and see what we can do together. #REV2014

Comments

Number of Comments: 2
Matthew S. Katz, MD

Friday, April 25, 2014 6:27 AM

Don, I agree that a goal is to become more empowered in your own health. But not everyone is ready or able when we first meet them, so where possible I use my role as educator to be an "empowerment sherpa".  Some people are only willing to go so far, and it's hard to avoid some stumbles. And we have to respect some people's limits since their comfort zone may be a less active role in decision-making.

I agree that we need concrete steps. I would favor developing a methodology to test, or find some that already exist in the literature.  Transdisciplinary collaboration always appeals to me, and I think we are headed in the right direction.
Don S. Dizon, MD, FACP

Tuesday, April 29, 2014 8:00 AM

Hi Matt: apologies for the delayed response. I am in complete agreement. Engagement takes time, but as with the sherpa analogy, it is well worth it in the end. We do need to respect all patients' thresholds for engagement as it is not a universally held truth that all patients want the same thing. Empowerment is another thing altogether- and this is where the work is needed even more. So many barriers, that I do believe need to come down. The question is how? I think social media can prove to be a very powerful tool.

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Don S. Dizon, MD, FACP