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Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in.
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Neely Williams, change agent, pastor, attending to communities’ spiritual and physical health through engagement and profound listening.
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Regina Holliday inspires me. A learning dynamo she takes her skills – painting, connection, spirit, whatever – to catalyze whoever touches someone she has touched. She’s a gift that keeps giving.
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Rare Patient Voice: Gateway to paid Patient Advocacy. Diagnosis-based experience brokers. Interview with Wes Michael.
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Capacity for best health ebbs and flows. That’s life. Some call citizen capacity – “patient engagement.” But that’s too weak. Growing and sustaining citizen capacity is citizen power. Our personal and community health depends on it.
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As a blogger, I talk. Every week, I talk. I talk about what I experience, what I think, and what I think I know. As my web/social media coach says, “You’re a content machine.” Now that I’ve started podcasting, I realize that I know enough to be dangerous. Podcasting is an opportunity for me to listen and learn. Listening has always been a challenge for me. Read More
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At some point, when we feel strong enough or mad enough, we want to take action to improve health. This is advocacy. Many of us advocate for someone, sometime. Or we want to. Ourselves, our family members, our cronies, our community. What lessons can we learn from a master at advocacy? I interview Mary Sue Schottenfels, Director of ClearCorps Detroit, a seasoned community organizer, a master advocate.
The lessons I heard from Mary Sue were:
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do. Read More
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
