What do Patients Really Want?

Image from Wikipedia - "Drawing Hands" is a lithograph by the Dutch artist M. C. Escher first printed in January 1948. It depicts a sheet of paper out of which, from wrists that remain flat on the page, two hands rise, facing each other and in the paradoxical act of drawing one another into existence.What do Patients Really Want? PART 1

By Joseph Kvedar, MD

I recently wrote about an innovator’s dilemma of sorts – or call it a paradox – in healthcare.  The paradox is that as we look to innovate in healthcare, the very authority figures we must turn to for fact-checking our innovative ideas are conflicted and highly motivated to support the status quo.  I’m talking about physicians of course.

Dr Kvedar shares his view of what patients want from an out-patient physician’s perspective. See how closely his views match your own and then join the discussion below.

In a fee-for-service world, physicians are both the fountain of relevant knowledge and the source of all revenue.  So we have built our workflows, systems and processes around their comfort and success.  As physicians succeed, so does the rest of the healthcare juggernaut.  I know other industries fall victim to these kind of MC Escher-like business models, but it seems particularly acute in healthcare.

My belief is that this paradox makes our industry highly susceptible to under-imagining what real innovation could look like.  We have some pretty deep blinders on, it seems.  One of my favorite Steve Jobs legends is that when asked about the consumer research that led to the development of the iPad, he quipped, “We don’t expect consumers to be able to tell us what they don’t realize they need.” [I am paraphrasing, but this is reasonably accurate.]

As we trot out our prized innovators in healthcare, we don’t seem to hear that kind of talk.  We hear about improved ‘door to balloon time’ in the care of acute MI, about using Lean to improve hospital work flow and supply chain management, about programs to encourage more generic drug prescribing and about decision support systems that help doctors avoid wrong dosing or prescribing medications that negatively interact with one another.  Indeed these are innovations, but they are all innovations that Christensen would classically call incremental.

At the Center for Connected Health we purport to be patient-centered in our approach.  I think we do a decent job at this. But try as we might, it’s hard to get at two things. One is a true patient perspective that is imaginative, articulate and consistent.

I’m making a pitch to our Symposium organizers that this year we devote a good deal of space on the program to drawing out the patient perspective from multiple angles.  We’ll see how persuasive I am.

The second challenge is finding patient advocates who do not feel intimidated in front of an audience.  We also have trouble finding advocates that are ‘pure’, i.e., folks simply disguised as patient advocates but really championing a different cause.  I have to give thanks to the tireless work of folks like Dave DeBronkart and Sarah Krug who are tireless advocates and my friends at the Society for Participatory Medicine. But we need more like them.

In the meantime, consider with me how we as innovators should best create the programs, technologies and services that chronically ill patients don’t know they want or need yet. How do we develop devices to motivate and monitor activity for the fitness buffs who think they are content with a good pair of running shoes and a gym membership? How important is the patient perspective in the development of connected health programs and services?

Next, I’ll share with you my impressions of an article that appeared in JAMA last  month about patient perspective.


What do Patients Really Want? PART 2

Today I’m following up to my last post, exploring the question of how and where the consumer perspective fits in the development of connected health.  Recently, I read with great interest a piece in JAMA called “What Patients Really Want From Health Care” by Allan Detsky.  It is a well-written and provocative piece. I don’t know Dr. Detsky but one gets the sense he must be a fine physician, in the tradition of Marcus Welby or the type of doctor I grew up with in Barre, Vermont, who would make house calls and always seemed to know how to make you feel better.

While interesting reading, to me, the piece seems flawed from two perspectives.  First, the article is highly focused on an acute care view.  Dr. Detsky notes that he practices in an inpatient setting and the piece reflects this bias.  Secondly, it is truly difficult to really know what patients want when you are in the role of the doctor.  I can fully say that when I take on the role of patient, I can’t really do so in a pure way, completely divorcing myself from my role as a doctor. I don’t think its possible for a physician to fully embrace the role of patient, possessing the insights into health and disease that years of clinician training and medical practice.  So, despite his best efforts, I don’t think that Dr. Detsky can tell us what patients really want.

It’s not that I think the JAMA article is off-point but rather incomplete.  There is so much more to health care than what goes on in the acute-care/inpatient setting. When we are sick enough to need an inpatient bed, most of us want to be cared for in the most profound way.  This perspective on care doesn’t translate well to the two other domains of health care that I routinely think about – namely health/wellness and chronic illness.

Focusing on health/wellness and chronic illness, I’m going to risk falling into the same trap I’ve criticized Dr. Detsky for: I’m going to take a stab at what I think patients want. However, using the blog format for this communication allows me to take advantage of social media allowing for feedback, especially from those of you who are not doctors!  So, please help me with this.  If we hit a home run, the output from this dialogue will be fodder for our Symposium and for other writing projects I’m involved with.

In the realm of fitness and wellness, I believe:

  • We want to live forever in a healthy, painless state.
  • We want our health care professionals to take us seriously when we engage them in dialogue around alternative approaches to diet, exercise, nutrition, sleep and longevity.
  • We want integration of our fitness/wellness world into our healthcare world. Right now they are silos that don’t talk to each other.
  • We want to engage our healthcare professionals in conversations around all of the data we’re collecting about ourselves with consumer-level devices (and not have those data dismissed as unimportant).

In the realm of chronic illness:

  • We want low-friction solutions to help us cope.
  • We don’t want to be told we’re sick and we don’t want to be treated as sick.
  • We don’t want to face the future consequences of our chronic (often symptomless) illnesses.
  • We want to feel as if we can dig ourselves out of the chronic illness abyss – to feel hopeful.

In general:

  • We want good service.  A person to answer the phone.  A kind voice.  A caring and supportive person.
  • We want to be treated with respect.
  • We don’t want to spend time in the doctor’s office or hospital.
  • We want simple, consumer-friendly processes for accomplishing tasks like scheduling an appointment or refilling a prescription.
  • We want access to professional advice (Dr. Detsky and I align on this one).
  • We want transparency of process – ‘a play book on how to get things done.’
  • We want a way to take charge of coordinating our care without complex, repetitive and obtuse processes.

For centuries, patients have put up with tremendous inconvenience and friction to move themselves through the healthcare system.  They’ve put up with it because the only way to get care is to visit the doctor and the system is constructed to make the doctor’s work life as productive as possible, not to make it easy for patients.  I expect that to change in the coming years.  We’ll see more patient empowerment,  more instances where consumers can make their own health care decisions without  a physician and more opportunities to streamline care delivery making it simpler and more patient-friendly.

What do you think?  Did I get it right? What’s missing? Let me know with a comment below.

About the Author

Joseph Kvedar, MD, is a dermatologist, clinician, educator and Director of the Center for Connected Health, Partners HealthCare, working with Harvard Medical School-affiliated teaching hospitals, including Massachusetts General and Brigham and Women’s Hospitals. His cHealth blog is listed in our Resources tab.