Posts Tagged ‘Consumer’

Consumers v Patients

November 1st, 2010

Although often use interchangeably, there are distinctive differences between consumers and patients in the context of healthcare.  Much is made of what to call those of us actively engaged in pursuing and receiving medical care from health professionals and this post does not intend to settle that issue, but after reviewing countless new conferences, pieces of legislation or regulation, coalitions, job titles, and  grant opportunities,  I’ve discerned a shift towards using consumers as the catch-all term to describe what are actually segments with different experiences, needs, views, and behaviors within the healthcare system.  Too often I see the few seats at the table begrudgingly opened to non-physician or non-academician or non-corporate  parties are filled by labor unions, general consumer groups, and organizations whose average members may not have visited a doctor in years. Organizers, though, feel satisfied in checking off the patient representation box.

Consumers, in my personal dictionary, are members of the general public. Consumers may be perfectly healthy (or think they are) with little contact, or desire to be in contact with the medical system.  The term consumer is also associated with rational nonurgent cost and feature comparison activities demonstrated in other industries with more transparent information sharing.

Patients, acute patients for the purposes of this post, are people with some illness or injury necessitating an interaction with the healthcare system.  They are not electively consuming goods or resources, but trying to secure the more effective treatment with the least amount of pain, time, and cost (if there is a choice or information). Their experience with clinical settings and information may be short-lived and soon forgotten.  If there was no error or incidence involved patients may return to their lives without having been significantly shaped or changed.

Patient Warriors, those patients with chronic diseases, diseases that are potentially terminal or that leave life-changing and to whatever degree life-defining marks (visible or invisible), offer something fundamentally different to the conversation.  Experience over 2 decades with 3 conditions at 4 institutions with 5(to the nth power) physicians, nurses, fellows, medical students, and techs is quantitatively and qualitatively richer than that of an acute patient or a consumer.  Their cost calculations are too often, should I buy food or medicine? should I bankrupt my family or save my life? should I pay these medical bills or my mortgage?

There is a great need from a population health perspective to reach all three segments but the approaches and expectations of each should be varied.  Moreover, than cannot be substituted for one another for research, policymaking, or other purposes.

Consider these questions:

Do consumers want access to their personal health records?

What role do patients want to play as part of their healthcare team?

Can patients be experts?

What is the consumer perspective on comparative effectiveness research?

These questions are almost meaningless as asked.  Consumers may not care one whit about access to a personal health record, but it may mean life and death to a patient warrior.  Patients (subject to individual preference and temperament) may want to be informed while a Patient Warrior may want to be perceived as a full partner or have endured for so long they just want the key decisions while they maintain a positive mindset.  Patients may not be interested in becoming an expert. Patient warriors (often E-patients) may spend hundreds or thousands of hours reading, attending medical conferences, questioning other patients and physicians.  Consumers may consider comparative effectiveness research as commonsensical as having Consumer Reports for other products and look forward to cost-savings.  A patient or patient warrior may be skeptical that a personalized treatment option may be made inaccessible to them.

Extent of interaction with the healthcare system and impact of health issues on someone’s life are the defining factors in determining these population segments.  If we really are to solve the myriad of challenges affecting healthcare we can’t afford to be lazy in our language or our thinking about ensuring that all stakeholders are truly considered and engaged appropriately.

What Should A Patient Sound Like?

October 20th, 2009

I started the DCPatient blog 6 weeks ago, unsure of the reaction I would receive for my opinions on what patients would like to see from the healthcare system.  Overwhelmingly, the reactions have been very positive and thoughtful with dozens of comments on this blog, LinkedIn, and Twitter.

One repeated criticism has been that I am “too educated” or write at “too high a level for the average patient” or that my postings were “not what they expected from a patient’s blog”.  Interesting.  What should a patient sound like? Write like? Blog about? My Harvard degree did not spare me from becoming ill.  My Georgetown law degree barely enables me to navigate insurance coverage.

While I understand the point that for most Americans issues of literacy, health literacy, numeracy, language and culture, time challenges, and family obligations serve as real barriers for understanding, engaging, and optimally accessing the healthcare system, my education does not make me any less of a patient than the next person in the waiting room.  What it does do, I feel, is obligate me to pick up the mantle for other patients and push, prod, and advocate for changes in healthcare that serve us all.  Regina Hertzlinger, Phd, of Harvard Business School, would call me a marginal consumer.

Last week something remarkable happened, I emerged from the desert to find that there were many others like me.  ePatientDave kindly introduced me to the Society for Participatory Medicine and a host of professional patient provocateurs  just as educated, annoyed, and activated as I hope to be.  Please check them out.

Trisha Torrey, Every Patient’s Advocate

Survive the Journey

Six Until Me

EPatient Connections 2009 Conference

A Patient’s Quest for Quality in Healthcare

October 5th, 2009

As part of an otherwise excellent presentation on the key drivers of rising healthcare costs, two slides purported to demonstrate that overbuilding of healthcare facilities was the result of inappropriate emphasis by patients on facilities’ cleanliness and convenience as measurements of quality.  The presenter’s point was that patients could not be trusted to assess healthcare quality since they chose such obviously silly metrics instead of judging and selecting hospitals or physician practices on the basis of cost, outcomes, or adherence to guidelines.

I had several thoughts in reaction, a few of which I can print – (1) With upwards of 2 million nosocomial (my favorite word) infections a year causing more that 100,000 deaths and complications, cleanliness is nothing to sneeze at; (2) in a past life I was taken to task by the HRSA administrator for making the point that there might be value in having the choice of  a transplant center close enough that families could support their loved one through a traumatic life event so I won’t comment here on the issue of proximity; but most importantly (3) patients judge what they can see.  If we make quality metrics such as cost, outcomes, and adherence to guidelines more accessible to patients then they will include those metrics in their decisionmaking.

And so I embarked on my own journey to see how readily available patient-friendly quality data is for patients.  First I looked for information on hospital information.  Hospital Compare, an HHS website powered by Medicare data, allowed me to compare hospitals within a radius of my chosen zipcode on process of care (basically guidelines/evidence) adherence, outcomes like death, and patient satisfaction elements like physician communication or nurse responsiveness.  Interestingly, among the subset of local hospitals I chose, quality was similar but median Medicare payment ranged from a two to four fold difference.  Still a limited set of procedures and conditions are included, I have no idea how patients with my demographics and characteristics fared, and the Medicare cost data may bear little relation to what I might actually pay under my insurance let alone self-pay.

Physician information is available in a variety of formats for various fees, typically $9.95 to $24.95 on websites such as HealthGrades and Physician Reports or compiled in the Consumer’s Checkbook Guide to Top Doctors or Castle Connolly’s various city-specific  Top Doctors.  Plugging in one of my specialist’s name I was able to get disciplinary actions (luckily none), board certifications, years of education, hospital affiliations and even ease of scheduling, however I had no idea from the information provided if my doctor was any good.

Lastly my health insurer has a premium designation that awards stars for quality and cost-efficiency.  I could not find the basis for those designations and having been ill-served by one of their “centers of excellence” in a particular specialty, you can color me skeptical.

My takeaway is that even for a highly motivated, insured, internet savvy patient, with fair familiarity with health care and health care jargon, comprehensive actionable physician and facility information is limited, hard to find or non-existent.