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culture

Money Back Guarantee: Value Proposition

By | Advocate, Consumer, Researcher | One Comment

XYZ Hospital – Money back guarantee

Acme Specialty Services – On-time appts or we pay you

We Wish Think Tank – Research for patients

People’s Pharma – Medications you can afford

I love value propositions: vague, aspirational, ethics remote.  Think: Uber – The smartest way to get around; Apple iPhone – The Experience IS the Product; Walmart – Everyday low prices; Google – Search Engine for the World

This month  I heard the term value proposition in two meetings I attended: A CMS Technical Expert Panel about the value-based measurement system and an iHope Study meeting (Improving Hospital Outcomes through Patient Engagement). It came up as, What is the Value Proposition for researchers, measure developers, and healthcare executives for patient participation? This seemed important to me. If we advocates are trying to sell the idea that patients and caregivers should be at the table for policy making, research, measure development, healthcare delivery don’t we need a clear value proposition?

What is a value proposition? A marketing term? Value proposition refers to a business or marketing statement that a company uses to summarize why a consumer should buy a product or use a service. This statement convinces a potential consumer that one particular product or service will add more value or better solve a problem than other similar offerings will. Companies use this statement to target customers who will benefit most from using the company’s products. Read more here.

I certainly can find resources for healthcare executives creating a value proposition to market to patients, such as The Five Key Elements to a Hospital’s Value Proposition. But let’s say that our audience is researchers, measure developers, or healthcare executives.  What, then, is the value statement for patient participation in governance, design, operations, and learning? I called my friend and go-to brain, Mighty Casey Quinlan. As usual, she expanded my mind. She suggested that Value Propositions assume a relationship between equal partners. Equal partnerships in healthcare (between clinicians and patients) seems to be my life work. But, as Casey explained the business of health care is anything but equal.  Although most money in healthcare in the US comes from sick or well individuals’ taxes, wages, earnings, or savings we have the collective perception that it comes from insurers, employers, governments. This creates a cliff size imbalance in the relationship. It could be similar to building a house. Most of us don’t have the skills, time, or resources to build a house ourselves.  We hire a contractor to manage and coordinate the skilled people who purchase and assemble materials that end up a house.  We pay for the house.  There’s an equal partnership. Our money, their work. Could be, but isn’t. Not if we don’t accept that it’s our money. No equal relationship, really no relationship at all.

So what’s our value proposition for investing our wages, taxes, savings, and earnings in our healthcare system?  I’m having trouble getting my brain around this. Any ideas?

Photo by Samuel Zeller on Unsplash

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The Culture of Participatory Research

By | Advocate, Researcher | No Comments

My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard it repeatedly while attended a one-day symposium, Putting Patients at the Center of Research: Opportunities for Ethical and Regulatory Oversight at

Harvard Law School’s Petrie-Flom Center. See a great report written by Andy Oram about the symposium here. The symposium showcased a PCORI (Patient-Centered Outcomes Research Institute)-funded study about patient involvement in research in non-traditional roles (not the subject*). The study actually focused almost exclusively on Institutional Review Board (IRB) perceptions of patients in non-subject roles. Interesting focus since the role of the IRB is to protect patient rights in research studies as subjects, not other roles.

*Please note: Subject is a loaded word for some. They say participant rather than subject, a more egalitarian term. I’m sticking with using subject because I’m introducing the label of Participatory Research. I don’t want to confuse the issues.

No one’s ever accused me of being a traditional patient and I’m not defensive. Right:) You know I’m heavily involved with PCORI whose reason for being is to fund research that matters to patients and will benefit patients. It’s odd that a PCORI-sponsored study would label anything a person does who is not an academic and not a subject of a research study as non-traditional. The roles the study refers to as non-traditional are membership in the research team as an investigator, advisor, consultant, recruiter, or disseminator. It seems that the study started with a bias when they called other roles, nontraditional, rather than, say, non-subject roles. It didn’t call researchers who include patients in non-subject roles, non-traditional researchers.

My patient/caregiver activism rests on a foundation that patients and caregivers should have a seat at the table for governance, design, operations, and learning of healthcare policy, planning, delivery, improvement, and research. It makes sense that much of the research industry feels like a fish out of water with patients in their midst. Perhaps labeling (non-traditional) is a reflection of their acute discomfort with other. We call people of the Navaho nation whose ancestors lived in the continental US before the Puritans, American Indians. We call people who emigrated from China during the California Gold Rush, Chinese Americans. Yet, I’m white, first-generation American. I’m not called Dutch/German American, just American. Perhaps when many researchers think patient, they think someone wearing a hospital gown with their butt crack bare, not skilled, insightful, hardworking, curious, passionate people like themselves. Other.

As a reviewer of PCORI funding requests and co-chair of an Advisory Panel, I’m fortunate to be part of a leading edge of culture change in the human research industry: Participatory Research. I have seen research teams with patient/caregiver stakeholder Investigators and Advisors paid on equal footing as the academics. I’ve even seen respite care budgeted for carees of caregivers, so they could free themselves to participate in any role. Culture change seldom occurs by waving a magic wand. Rather it moves in fits and starts as the bulk of researchers follow Participatory Research early adopters. Early adopters see participatory research as a no-brainer. Those that follow feel like they’re putting round pegs in square holes. They question the capacity, skill, and confidentiality of lay people in research team roles. They think patients need to be protected, that they need to become more research literate. A great research team has members with statistics and methods expertise, recruitment expertise, project management expertise. Often with less experience with patient/caregiver life flow and direct care clinician workflow. They seldom require life experience training or statistical training for those without such experience. However, everyone, no matter the role, needs to have documented understanding of the rights of subjects and confidentiality of individual data.

I appreciated the presentations at the symposium of three patients (Jane Permuller, Marty Carney, and Paul McLean) in non-subject roles highlighting the benefits of patient participation in research. I also respect Harvard Law School’s Petrie-Flom Center for scratching the surface and reminding us (me) that the spread of participatory research is in its infancy and we activists have much work to do.

Managing team culture from the inside out

By | Advocate, Leader | No Comments

In January I wrote about the magic lever of organizational culture change (link). Today I’m preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants – sharing experiences has much more value than anything I could share – I have the following pearls:

  1. Be the ideal – act as you expect others to act – the golden rule. Simple but tough. You have most control of this
  2. Hire for culture – You can train skills, but you can’t train for attitude. The best opportunity is at hiring.
  3. Leverage diversity -build different skills, ways of thinking (Myers-Briggs), and life experiences into your team. 
  4. Experiment, learn with your teams – who knows what will work? Try stuff out. If it doesn’t work try something else
  5. Engage patients & caregivers – it’s the right thing to do, but it also changes the conversation dramatically 
  6. Be transparent with information – Whether you have grade A or grade C data – share it. Let people comment, criticize, engage. Tell stories. Welcome scrutiny.
  7. Market the change – You can’t change everything or everyone, but you can change the people who matter (the link takes you to Seth Godin’s blog)
What do you think?