Category: Patient Stakeholders

Hospital Warrior-Take II

You may remember the “Hospital Warrior” post from a few weeks ago, in which we discussed the importance of having somebody to go to bat to make sure that you get good hospital care, delivered on time, when you need it. 

Today I spent some more time looking around in the Hospital Warrior site and came up with this. Rather than focusing on having someone else be your advocate when you are down and out, this piece focuses on how to organize information when you are newly diagnosed with a serious and chronic disease, in this case MS, so that you can be your own best advocate. In this regard, issues such as how to start with getting an understanding of your diagnosis, identifying your needs, establishing your goals, learning to speak up and recruiting help as necessary are all covered in this handy-dandy guidebook. 

Bottom Line. The common theme here? Preparation! From diagnosis through crisis, it is imperative for a patient, and/or for a patient-advocate, to take an organized and forceful approach to gaining access to appropriate care. 

Letting the chips fall where they may is not a viable option!

Synthesizing a Patient Journey

Check this out. What you will see is a description of the “LEAP” program, assembled by Alexion to permit their team members to get a more in-depth feeling for the 4.8 years and 7.3 specialists journey that the average patient with a rare disease traverses to get to an accurate diagnosis. Key moments, e.g. the point at which symptoms begin, are explored, and the roles of the various key players in the journey are investigated. 

In this piece, Alexion reports out the benefits they see from using this approach, some anticipated, others not so much.

Desired/anticipated results include the development of more empathetic thinking about patients on the part of their team members.

Unanticipated advantages include the opportunity for team members to learn to work with other Alexion professionals, in many cases people they had never even met. 

Bottom Line. As corporate “social responsibility” programs become increasingly popular among pharmaceutical companies, I am betting that we will see many more programs like this being launched by health care companies.

And I think that is a good thing!  A very good thing!!!

How Do You Get People Of Color To Get Vaccinated???

Check this out. What you will see is a Tweet from a Black resident physician who had just left a barbershop. While there, he heard other patrons warning each other not to receive the COVID-19 vaccine. Why? Among other reasons, the concern was expressed that included with the vaccine would be “trackers” that would let the recipient be followed. Ironically, the night before I had been having a conversation with a Cardiologist, as part of my “On Doctors’ MindsSM” project, in which he mentioned that some of his patients had expressed that same concern. As noted in this Tweet, there was a palpable irony in the fact that most if not all of the patrons had cell phones on their person that permit exactly that tracking capacity.

Bottom Line. SO. How do you get around concerns like this and get people who hold such beliefs, of color or otherwise, to get vaccinated? Hint! Talking science probably won’t work. Rather, you need to get people with “street cred” to do the reassuring. In several studies we have conducted over the years, pastors and barbers often wind up being seen as credible sources. We may need to communicate through them. 

What will work here???

The Longer, Broader Patient Journey

Check this out. What you will see is a post indicating that in Pediatric Oncology, as in so many specialties, we need to take a longer and broader view of the “patient journey.” We need a longer view because with pediatric cancer, as with many other conditions, the diagnosis unfortunately starts not only an acute course of therapy, but potentially triggers a lifelong series of varied complications.  We also need a broader view, since a diagnosis frequently activates responses by many of the patient’s “Life Networks,” and her “Event Network”  as described by my colleague Dr. Glenna Crooks in her most recent book.  

Bottom Line. In conducting patient journey research, we need to be thinking much “bigger” than we have been up to this point. For example, I haven’t typically thought of family bankruptcy as a part of the patient journey. As pointed out in this piece, in a sad number of cases, it can be!

Why Would Patients Care About “Statistical Significance???”

Check this out.  What you will see is yet another article that elicits a “DUH!” when you read it. A simple premise here. The clinical trials that the FDA requires for drug approval focus on “statistical significance.” Translated, drug companies have to demonstrate that their product is better than placebo. Yeah, but…From the patient’s perspective the real question on the table sounds more like “Is this drug good enough to help me with the condition for which I am taking it without causing unacceptable side effects?” That’s different.

Bottom Line. Again, the key takeaway from this article is a simple one.  If you want your new drug introduction to succeed, your research had best indicate that it is good enough to please patients, not just the FDA. Which in turn requires getting a good understanding of what patients’ expectations are for a drug in your treatment area.

Ringing The Bell

Check this out.  What you will see is the story of a rite of passage. No, not a Bar Mitzvah or a Sweet Sixteen. This is a story about a cancer treatment rite of passage.

You see, at many cancer treatment centers around the country, it is now a rite of passage for oncology patients to ring a large (think school bell, ship’s bell, etc.) bell to celebrate the completion of their therapy. Sounds like a really thoughtful, meaningful step to build into the treatment process. BUT. The RN pictured above, who lives her life dealing with cancer patients, has some reservations.  

She notes, for example, that at the conclusion of prescribed therapy, no one knows for sure if it was curative, or even enough to take the patient into remission.

She describes a patient who, at the end of radiation therapy, was so tired and burned out that the last thing she wanted to do was to ring a damn celebratory bell.

And she asks about patients with metastatic disease that has spread to who knows where. When is cancer therapy for these cases really “over?” 

Maybe, she suggests, giving the patient a clean set of sheets or some new towels might be more appropriate to acknowledge reaching a milestone in therapy, but not necessarily its conclusion.

Bottom Line. Yup. We need to be ever vigilant about ideas that sound really good, but may be swords that cut two ways.  

Please Don’t Tell My Family

Check this out. What you will see is an Oncologist’s recounting of the sad story of a 46-year old, non-smoking, active runner, wife and mother. When presented with the diagnosis of lung cancer, she requested that the doctor not tell her family because the “stigma” of lung cancer was something that she did not want to face. She held to her silence through her death, with her obituary announcing that she had died of breast cancer.  

This piece frankly left me scratching my head. I had never thought of lung cancer as having a stigma. Which got me to thinking. Where does this stigma come from? What other diseases have stigmas? How does all this work?

Okay, I get STD’s carrying a stigma, but what else and why?  

Bottom Line. At a very practical level, I am guessing that a disease carrying a stigma can have profound and unfortunate consequences. For diseases like Type II Diabetes (Only overweight people get that, right? It’s their fault!!!), for example, one of the consequences might well be non-adherence with a treatment regimen. 

I’ve never thought much about the PR challenges that individual diseases have or considered what are the consequences of these problems and what if anything can and should be done to assuage problems in this area.

Maybe I should think some more about that!  Maybe you should too!!!

Paying Attention To Patient Modesty

Interesting. In the years I have been writing this blog, I don’t believe that I have typed in the word “modesty” even once. BUT. Check this out. What you will see is the home page of an organization (?) dedicated to patient modesty. Spend some time hitting the various links on the page and immersing yourself in some of the issues that are subsumed under the modesty rubric. Should the practitioners and their assistants taking care of us always be the same sex as the patient. Should we have to take our underwear off for knee surgery? Etc. Bottom Line. In the year of the #MeToo, I marvel at how little (how about none!) chatter this topic receives. While it might not be the number one priority in U.S. healthcare today, I am thinking that a little attention paid here could go a long way toward improving the patient experience. 

Health Insurance Is Not Enough If You Are “Really Sick”

Check this out. What you will see is a NYT story reporting the findings of a survey that investigated the experiences of almost 1,500 people in the U.S. who were “really sick.” In a nutshell, what you will see is that our concerns about finances under such circumstances are far too circumscribed. We usually worry about deductibles, copays, etc., and those can indeed add up quickly for the seriously ill. Add up to the point at which the patient is left to decide whether she should pay the electric bill or buy the pills. BUT. Other financial challenges also bedevil the seriously ill. Like a 20% reduction in pay for up to 6 months, or even the loss of a job. 53% of people in the study found that their work had been interrupted as a result of their illnesses, and “health insurance” doesn’t cover that. Bottom Line. The spookiest part about all of this is that patients have no idea what to expect in terms of uncovered medical costs, lost income, etc. With such expenses often coming later in life, financial recovery is often impossible.  I have no profound thoughts about how to fix all of this. But I will ask you to think about the impact that all of this has on our customers, physicians and patients alike. If we are going to lay claim to being “customer centric,” we need to understand such things. “Back stories” are often very important. 

Why Do Doctors Hate Their Computers?

Check this out. What you will see is not the quick blog post that I usually send you to for a quick burst of profundity. Nope. This is a rather extensive and well written New Yorker article that sets out to answer this important question. Read it! Although the article goes on for pages, its message is summarized in one great quote: “…three years later I’ve come to feel that a system that promised to increase my mastery over my work has, instead, increased my work’s mastery over me.” Several important points are made here. First, physicians thoroughly understand that digitization is necessary to support medical care in 2018 and beyond. AND. They are clearly among the most tech savvy of all professions. So, what’s the problem? As you read over these pages, the answer here becomes painfully clear. Doctors believe, and apparently rightfully so, that these systems are designed without taking into consideration the contextin which the physician works. What used to be done in just a few keystrokes now requires many. Interfaces are built based on “political” concerns, rather than “technical.” The costs involved in setting up a computer system like the one described here are huge. In the $Billions. AND. The quantity and quality of the medical care being delivered actually decrease substantially while the practitioners wrestle with the new software. Bottom Line. Funny. Sort of. We live in a world that increasingly wants to compensate physicians based on “quality of care” and “outcomes,” yet we foist computer systems like this on them.  Not fair!