The group of 12 "patient leaders" brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC  to contribute our respective experiences toward the establishment of a working definition of a "Patient Centricity" healthcare standard.

The group of 12 “patient leaders” brought together by a global healthcare company in July, 2015 at a beautiful rustic setting outside of Washington, DC to contribute our respective experiences toward the establishment of a working definition of a “Patient Centricity” healthcare standard.

      This title of this picture is misleading because it only depicts the twelve (12) patients, patient advocates, activists, caretakers, health care professionals, rare disease advocates, health advocates and community leaders (collectively, “patient leaders”) who recently took part in a ground-breaking meeting just outside of Washington, DC organized by a large, global healthcare organization aimed at defining “Patient Centricity” for the purposes of utilizing it as a future new standard by which patient care is delivered, patient products and services are designed and patient concerns are listened to, and acted upon, in creating and implementing their business objectives.

      The reality is that these twelve (12) people, of which I am one (1), represent many more around the world who are also “Pioneers” of “Patient Centricity,” three (3) of whom, for example, I can personally attest have been working at this for several years by transforming patients into legitimate “stakeholders” at their respective world-wide renowned Healthcare Conferences and Events.  More specifically, Denise Silber via “Doctors 2.0 & You” held annually in Paris, France (which now has a year-long presence in social media), Dr. Larry Chu via “Stanford Medicine X” held at various times during the year at Stanford University (which also has a year-long presence in social media) and Regina Holliday, an artist healthcare activist who began to include patients and their stories in The Walking Gallery of Healthcare and most recently at her Conference, #Cinderblocks2: The Partnership with Patients.

What is “Patient Centricity?”

      Up until now, “Patient Centricity” has been considered by many health organizations to consist simply of designing a healthcare service or solution around the patient.  Thus, when hospitals or medical practices advertise themselves as being “patient-centric,” they are trying to convey that they “stand out” because without exception their doctors, nurses and surgeons actually listen to patients and meaningfully consider their concerns and preferences before doing what they think is right to attain the best or desired patient outcome.  But I’ve always found that “message” to be somewhat disingenuous because all along that’s what I thought was occurring whenever I went to consult with a well-respected health care professional and thus I’ve wondered why it is suddenly being emphasized?  This begs the question, what was their organizational policy before it was “patient-centric?”

      Perhaps prior to the above-pictured innovative recent think-tank of patient leaders, I was a bit cynical in this regard because I have been hospitalized for Severe Crohn’s Disease at some of the world’s most prestigious institutions, each of which also boasted a “patient-centric” atmosphere.  But my experience at the most prominent one was anything but that as it was exclusively reliant on the whims of the doctor or surgeon who was treating me there.  This does not make that institution less world-renown but in my case it made two (2) particular health care professionals disgraceful human beings who cared more about their “statistics” and internal institutional healthcare analytics than they did about my personalized post-operative reaction or my repeated complaints of inadequate pain relief.  In that case, “Patient Centricity” was discarded for “Don’t listen to the Patient, I know what is best for him Centricity.”  They made me feel like I was ostracized from one of the world’s greatest hospitals all because there were complications with my surgery, which, incidentally, was my 20th or 21st abdominal surgery, so wouldn’t you think complications would surely be expected? [Rhetorical]

      Thankfully because of the relentless advocacy of the people like the 12 pictured above, their brethren in Europe whom are also a part of this particular innovative Patient Centricity initiative (see below) and through the on-going work of patient-centric leaders like Denise Silber, Dr. Larry Chu and Regina Holliday, the definition of “Patient Centricity” has become more meaningful to healthcare organizations because it may well soon become one of the most important standards in measuring the quality of both patient care and of the “patient experience” and thus substantially determine a facility’s or company’s ability to attract patients and valuable industry accreditations.  As a result, a comprehensive and universal definition of “Patient Centricity” is sorely needed and it is for this reason the 12 of us were selected to brainstorm with one another in a lovely historically preserved “Country House” just outside of Washington, DC in late July, 2015.

Why was this meeting different & thus more productive?

      Whenever every Healthcare Management Consultant makes a presentation, the following phrase is either included on a PowerPoint slide or it is uttered as part of their slick shtick:  Patients are at the core of tomorrow’s health system.  From an experienced patient perspective, that’s like saying whomever wins the 2016 United States Presidential election will have a significant impact on the world, Donald Trump is not a “thoughtful politician” or Showtime’s “Ray Donovan” character is a bad-ass.  Each of these statements evoke the same “no-brainer” revelation in the listener and require zero risk in the speaker going out on such a strong limb.  Therefore, proclaiming patients as being vital to tomorrow’s health system is both an obvious and safe prediction to make and rely upon.

      By comparison, this July, 2015 Washington, DC gathering of what this large, global healthcare organization considered the top United States “patient leaders” was unique because they bypassed the Management Consultancy-speak and went directly to the source for answers to questions which they hoped would form a working definition of “Patient Centricity.” They honestly did not know what the final result would be or if this corporate initiative would even be productive.  Witnessing it as a former attorney, it was like watching a litigator ask his own witness questions to which the attorney did not know the answers, a cardinal sin for a litigator looking to WIN.  But this global healthcare company wasn’t looking to “WIN;” rather, they were looking to LEARN.  Accordingly, they put faith in experienced patient leaders, took away all safety nets and in the process revealed their genuine interest in learning from patients what this soon-to-be very important touchstone term should mean.

      The name of the healthcare company which funded this Patient Centricity initiative is irrelevant since this is an experimental program and until these meetings create tangible programs, I think what is of paramount importance is that these meetings are actually taking place and trusted input is being sought of 10-12 patient leaders in the United States and 10-12 patient leaders in Europe.  I imagine, and hope, there will be many more meetings to apply the standard of Patient Centricity to this healthcare company’s present and future products and services but the basic “agenda” for this first meeting was simple: Create a definition of “Patient Centricity.”  Instead of taking suggestions from this group of erudite patients, caretakers, advocates and healthcare professionals, after casually getting to know one another at a pleasant informal dinner, the next morning we were separated into two (2) groups of 5 or 6 and then were asked to converse and list the attributes which described our best and worst experiences interacting with our respective health care systems.

      I had been through an exercise like this before so I knew what to expect in terms of the “process” and how the positive attributes were going to be used to ultimately craft a definition of “Patient Centricity,” then it would be compared to the results of the other group so that the entire group could then take the best from both groups to finalize a working definition of “Patient Centricity.”  While I have witnessed this type of approach attempted before, I have never seen it executed this flawlessly as the intent and genuine interests of the 12 patient leaders were perfectly aligned with the objectives of this progressive global healthcare company.  I was also amazed at how much I learned by listening to the stories of the other patient leaders as some found the best and most important attributes of their doctor-patient or hospital “transactions” to be outcome-oriented, compassion, explanation of treatment options, selection of words by the healthcare professionals, providing on-going education about their disease, inclusion of the patient’s spouse or family in decision-making, respect, follow-up care, utilization of plain English on medication labels, etc.

      Some patient leaders emphasized the importance of making patients equal “stakeholders” in the process while others wanted to include access and affordability to medication as part of the definition, particularly from the perspective of the Payors and the Pharmaceutical companies.  I tried to figure out if preferred positive attributes were somehow tied to particular diseases but each patient leader seemed to have such diverse experiences that their respective inputs transformed any predicable attributes logically associated with their diseases.  I also realized that several of the suggested attributes were more aspirational than realistic but I learned from my 11 other colleagues that inclusion of such expectations is important at this critical definition formation stage.  Most importantly, by the end of the meeting, my skepticism coming into the meeting about the significance of the establishment of a Patient Centricity standard was gone and I now look back at my “Don’t listen to the Patient, I know what is best for him Centricity” story and can laugh when prior to this meeting it’s never been a memory I wished to recall.

What is the definition of “Patient Centricity”?

       The actual wording of the definition we came up with as a group is not for me to disclose on my Blog since it is technically the property of the company who brought us all together.  Suffice it to say, once a comprehensive Patient Centricity standard is adopted by all Institutions, Providers, Participants and Payors of healthcare then patients with complex diseases or complex forms of diseases (like me) needn’t ever worry about having their seemingly abnormal concerns discarded simply because they deviate from the norm or they prove to be a much more difficult patient than the “textbook” case.   But I think you can gather from this Blog Post that I was incredibly impressed with each of the 11 other patient leaders and how, in their own ways, they fit their ideas into the conversation to ensure they counted.  There was also a great deal of mutual respect in each group so as much as we all had so much to offer, we also knew our experiences were no more or less important than those of the other patient leaders and therefore we worked very well together.

      Whether it was because we were able to “frame” the issues so succinctly or because these company executives had already been through this exercise with our patient leader colleagues in Europe, I have never seen executives so “engaged” on a number of levels (i.e., listening, speaking, note-taking, organizing, etc.) while still maintaining such a welcoming and casual atmosphere.  By the mere fact that we were listened to so intently, I am now so enthusiastic about the future and how patients will be universally treated.  It may take time for Patient Centricity to become “the” standard in healthcare but when smart progressive companies are investing in devising a thorough definition of it, something tells me I have been included in a cutting-edge and industry-leading initiative and for that, I feel privileged.     Stay tuned.

Please feel free to comment on a Patient Centricity healthcare standard.

Please feel free to comment on a Patient Centricity healthcare standard.