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What do Patients Really Want? Part I

January 17, 2012

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.

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?

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

11 Comments leave one →
  1. January 18, 2012 11:21 am

    Actually, we DO know what patients want, we just don’t pay attention to it. Although patients do not want to die, they certainly don’t want to suffer, receive ineffective non-beneficial treatment or cause serious financial strain for their family. When 344 seriously ill patients were asked to rank their most important desires near the end of life, the top three were (1) freedom from pain, (2) peace with God, and (3) presence of family.

    Other important goals were having finances in order, feeling that life was meaningful, resolving conflicts and dying at home.1 Interviews of 126 patients living in a nursing home when asked the same question indicated they wanted (1) good pain and symptom control, (2) to avoid inappropriate prolongation of the dying process, and (3) to achieve a sense of control.2

    1 Steinhauser KE, Christakis NA, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: 2476-2482.

    2 Singer P, Martin D, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999; 281(2):163-168.

    • January 19, 2012 4:41 pm

      this is a useful view. I’ll hold off further until your reaction to ‘part II” which will come out next monday

      • January 19, 2012 6:26 pm

        I’m looking forward to reading Part II. In the meantime, if you’re looking for a really disruptive technology that gives new meaning to “what the patient wants,” check out the new advance directives service called at Already being used in the US and abroad, and very consumer-oriented. Like no other advance medical directives service out there.

  2. January 19, 2012 4:34 pm

    I appreciate your position of what the patient doesn’t know they need. Innovation that is creating a paradigm shift often has to ping the fence with ideas to hone in on the game changing interface – ala Apple/Walkman/Braun.. The world of devices is accustomed to this, the world of workflow change less so, but we have now seen a major trend in consumer behavior shift. What is interesting as we explore novel interactive and participatory models of healthcare is motivation is our greatest hurdle – that of the doctor to seek efficiency and that of the patient to bring short and long term benefit. Revenue generating short term benefit solutions adopt quicker, but healthcare and preventative care is fraught with those issues that are cost (revenue) preventing and have long term gains. We need to continue to push and create experiences that are a delight for the consumer, their perspective is useful more in are we solving a pain point – less so of: Is this what you want.

    • January 19, 2012 4:42 pm

      its a fine line. if we don’t ask patients (consumers, customers) what they want, we risk developing irrelevant solutions and appearing arrogant. But if we develop ONLY on what the tell us they want, we’ll miss the ‘Apple’ moments.

  3. Nivedita Deshpande permalink
    January 20, 2012 12:36 am

    this is particularly interesting to me as i share the same view as you.until we develop patient centered initiatives, that actually take the patients into account when designing the game plan, we are not being truly successful. as more health programs get introduced each year and developments take place the change management strategy adapted by governments and policy developers seems to be incentives to the doctors, subsidizing technology for purchase and all other means by which a particular service or program is adapted quickly by the health professionals. there are very few strategies that are designed around patient uptake of a service .i think what patients want is more information, education and awareness about things they can demand from their GP’s or specialists, how can remote health help them better rather than travelling long distances or simply put how can an iPad help them connect to an ophthalmologist in the city, when they are unable to drive because of an eye infection.

    • January 21, 2012 12:13 pm

      Thanks for your insights. On Monday, 1/23, I’ll publish part two and would love your thoughts on that as well.

  4. Adam Kaufman permalink
    January 22, 2012 1:17 pm

    Joe – thanks for crystallizing a key challenge in healthcare innovation (as you often do) but I want to take issue slightly – meant to spur dialogue so will state more extremely.

    Innovation in industries either need to provide value to the current purchasers or (2) disrupt it in such a way that new purchasing models arise.

    In healthcare – consumers/patients – represent a small fraction of the purchasers of healthcare. Providers – doctors and hospitals – and the payors buy most of the services so naturally commercially successful innovations will point to them. Consumers may increase their purchasing with HSAs and exchanges, but to-date out-of-pocket spend does not drive the healthcare market.

    We all know countless startups / innovative new divisions of larger companies that have tried out-of-the-box, wow the consumer solutions – and many truly are disruptive but time after time consumers have not paid for these things.

    So I am not sure how relevant a reference Apple disruptions for consumer focused innovation in healthcare. The paraphrasing of Steve Jobs would be more like “I don’t really bother to listen to doctors or hospital administrators or payor quality people when I design products/solutions, cause they do not know what they truly want.”

    I agree we need to energize the consumer – put them at the center of their care – and have them demand better solutions, but until they are actually part of the industry – in terms of making purchase decisions – they will not be central in our innovations.

    Look forward to continuing the dialogue and of course the leadership of the center in driving consumer engagement.

  5. January 22, 2012 8:59 pm

    interesting thoughts. your premise is sound. the reason we don’t have a patient friendly system is because they wield no purchasing power….Let me know what you think of part II, due out tomorrow


  1. Will Consumers Pay for e-Health?Health 2.0 News
  2. Will Consumers Pay for e-Health? | The Health Care Blog

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