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Consumer

Building Capacity. Building Power. Citizen Power.

By | Advocate, Caregiver, Consumer, ePatient, Leader, Podcasts | 3 Comments

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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Get along. Get it done. Governance

By | Advocate, Consumer, Leader | 3 Comments

If your team, organization, the project doesn’t seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how. Activists, professional people, community folks – anyone who’s part of a team knows the difference between a well-run team, an effective meeting, and the duds. Read More

Special edition for blog subscribers only

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader, Musician, Researcher | One Comment

Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing.  I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.

You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind.  I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time.  I’m amazed.

The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.

I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.

But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.

  • How do you like this transition and change I’m making?
  • Do you listen to the podcast? Read the show notes?
  • Do you still find the blog posts, show notes, written stuff valuable?
  • What do you think about the topics, the guests, the music, the quality of sound, the noise?
  • How about the length? It’s ranged from 20 to 68 minutes.
  • I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?

I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?

Talk to me, please. Email me at danny@health-hats.com!

And thank you for your loyalty.  Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!

 

State of Inclusion. Ame Sanders, Equity Warrior

By | Advocate, Consumer, ePatient | No Comments

It’s everywhere, it’s everywhere. I can’t help but see almost everything I do in my advocacy through the lens of health equity.  Whether it’s making decisions about our health and medical care, managing pain, young adults with complex medical issues transitioning from pediatric to adult medicine, men in caregiving, data sharing, patient access to data. Everywhere. I’m defining equity as people having the same opportunity to achieve best physical, mental and spiritual health no matter their social circumstances, biology, genetics, or physical environment. I wanted to take a look at bias, inclusion and equity from outside healthcare. So, I interviewed Ame Sanders and we talked about our own biases, inclusion or lack thereof in our communities, measuring bias, and taking action to reduce inequities.

Ame Sanders and I met at Seth Godin’s Podcasting Fellowship, 350 or so people from around the world learning to be podcasters. Ame caught my eye with her podcast, Equity Warriors, and her company www.stateofinclusion.com. See the show notes for further information. We decided to interview each other. You can hear Ame’s interview of me at the link above. Being a practical person, I look for what works and what we can learn from other people’s experiences.  While Ame doesn’t work in the health care space, she has much to teach us about the state of inclusion in communities. Read More

Equity: more to achieve the same

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Podcasts | No Comments

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More

Managing Pain – A Reality Check

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Researcher | 3 Comments

Last month I asked for a reality check from my social networks on behalf of the Patient-Centered Clinical Decision Support (PCCDS) Learning Network about helping people use information better in managing pain:

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 and 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.

Many (more than 25) of you responded. You being People at the Center of Care (people with pain, medical and non-medical professionals advising and treating people with pain, and the people who support patients and professionals day-to-day.) Thank you for your insights. They make a difference. Here’s a summary, lightly edited, of what I heard.

Opioids and Pain

Most respondents couldn’t relate to opioid clinical decision support.  They could relate to pain management. Nobody said they preferred to take opioids. A few said that when their chronic pain was really bad, opioids were the only thing that worked. They were frustrated that they couldn’t get them anymore due to the heavy focus on opioid reduction.

  • When I have a sickle cell crisis, only opioids relieve my pain. I’ve had to remain in excruciating pain because they thought I was drug seeking.

Describing Pain

Describing pain is frustrating and limiting

  • The question frustrated me every time. I asked them to create a standard list to choose from addressing the quality, duration, intensity, location, etc. of the pain. That would have been so helpful. As you have learned to gain awareness to name and to know your pain, your mindful ability to stay with it, rather than run from it, I believe is part of the equation you seek to address. Aversion and fear of our experiences only add another layer of pain.
  • I have to manage my doctors’ abilities to hear about the pain. If I score too high I’m a complainer and they think nothing will work. If too low, then I’m not worth treating.

Pain Goals and Concerns

Managing pain occurs in the context of a life (determinants of health)

  • Discuss my pain goals and concerns with me, including financial & emotional goals and concerns. 
  • Care about my life and what I’m trying to accomplish. I need pain relief to be a parent, a worker, a partner, a contributor.
  • Chronic pain is expensive to manage when most health insurance benefit plans readily cover Rx, but only sometimes cover non-medication therapies. E.g. denial of physical therapy claims for on-going pain management relief. In an ideal scenario, health insurance would cover non-medication-centric pain management services as a matter of course, in parity with Rx coverage for the same condition.
  • Refer patients to integrated behavioral health support to address coping skills in recognition of the chronic pain and depression relationship.

Managing Pain

The bridge between evidence and personal expertise.

  • Managing pain is a continual experiment. Nothing works every time you’re in pain, including medication. You need several proven choices. 
  • I try to keep a journal of how I’m feeling, what I’m doing, and what works as I manage pain. It’s really hard to do when you’re in pain.
  • There are many therapeutic strategies that address the symptoms of physical pain and ways to interrupt the pain cycle and the experience of pain.  I wish I were an expert on the subject.  I know that there are some good answers available to people who struggle with chronic pain.   I believe that people need a combination of coaching and knowledge, as well as hands-on treatment, to benefit from these answers.

Doctors and Managing Pain

  • Doctors only know about drugs.  They can’t admit they don’t know about anything else that might work.
  • Doctors don’t have time for pain management. It can’t be done in occasional 20-minute visits.
  • Most of my questions about pain management occur when doctors aren’t available, like the middle of the night.
  • Technology is not a substitute for time and the relationship with my doctor.
  • I think we need to make the WHO pain ladder (cancer pain) one outcropping of a multimodal pain strategy but start with nonpharm, reorienting the meaning of pain, and subsidize multimodal pain plans before surgery and after injury.  As a pediatrician, pain researcher, inventor, innovator, and former procedural sedationist (I’ve pushed a LOT of fentanyl/propofol/ketamine), I’m much more interested in prevention and lowering the amount of opioids in circulation. 

Other Resources

  • We have an evidenced-based six-week peer-led pain self-management program that is widely used in the US, Canada and elsewhere. People can find locations near them by going to the Evidence-Based Leadership Council and clicking on the program locator on the upper right.
  • As part of The Pain Companion book launch, I’ve been on a number of excellent radio and TV shows recently talking about life with chronic pain and how we might find greater ease and well-being.
  • I recommend getting in touch with the British Pain Society. They are the organization that supports British Pain Clinics.  The Pain Clinics in the UK have embraced some of the complementary and alternative remedies that are quite helpful with pain management.   It is part of their standard protocol and clinic staff work with patients to implement these treatments.  

Suggestions and Questions

  • We should compensate doctors better for pain management discussions.
  • Why don’t we use palliative care specialists when patients have chronic pain? Palliative care is not just for the dying.
  • Pay post-op patients $200 to spend on a Pain Plan approved intervention if they don’t fill an opioid prescription. 
  • Give a list of evidence-based non-pharm options to every pre-op patient, and with every new opioid script.
  • Isn’t there a start-up in compiling non-medication pain management resources by zip code?
  • Why don’t we do more research about non-medication options for relieving pain?

Wow. Responses are still rolling in. Thanks to everyone. I am compiling these into a resource center that will include a pain management section. This is just the beginning of the conversation.

Photo by Jeremy Bishop on Unsplash

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National Action Plan to Better Manage Pain

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Managing Pain

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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Values for Managing Health

Paying for Value. I’m Overwhelmed. Please Read This

Paying Patient Experts

By | Advocate, Caregiver, Consumer, ePatient | 2 Comments

You’ve heard the Chief xxx Officer saying, I don’t need to listen to patient experts, we’re all patients. Gee, what do you say to this inexperience? You’ve also heard the empathy and born-again drive of the Chief xxx Officer who has a chronic illness, was recently hospitalized, or is the caregiver of a family member with chronic illness. Nothing can replace the experience of spending a day in a hospital bed or navigating your neighborhood for a day in a wheelchair.

I attended the Society of Participatory Medicine’s first conference a couple of months ago. Some businesses making big money from patient data describing their volunteer patient advisory panels or providing gift cards to their patient experts. We’d like to pay more, but it’s what we can afford.

I’ve been a reviewer of funding requests since 2013 for Patient-Centered Outcomes Research Institute (PCORI). PCORI pays all stakeholder reviewers (patients, clinicians, scientists, administrators) the same stipend-a reasonable amount.

In 2013 and 2014 funding applications I reviewed listed either no payment or $50 gift cards for patient stakeholders on their Research Advisory Boards. By 2016 many funding applications listed $500-$1000 stipends. In 2017 I saw an application that budgeted for the payment of respite care for caregiver experts’ carees. We’ve come a long way.

The US has a love-hate relationship with paying for value. It’s like the Golden Rule: easy to say, tough to do. Just look at the Trump-Ryan-McConnell tax bill. I digress… The healthcare industry values credentials as a proxy for knowledge- whether or not they know what the acronyms mean. Acronyms = expertise. Credentials usual mean deep expertise in a narrow subject. We willingly pay for deep and narrow with credentials. Patients can have deeper knowledge about a narrower subject than those credentialed. We don’t have a means to calculate that value nor a willingness to pay for it. Read More

caregivers hands

Caregivers Rule: National Caregiving Conference

By | Advocate, Caregiver, Clinician, Consumer, Family man | One Comment

I just got home from the 2nd Annual National Caregiving Conference in Chicago convened and hosted by Denise Brown and  NationalCaregiving.com. You know the drill – most health care anywhere in the world is provided by family caregivers and parents. The attendees, mostly active or recent caregivers, networked over their shared lived experience. Presentations about caring for elders with dementia was the most common thread and topic.  Occasionally I heard chatter about caring for children or depression. Sometimes the stories of frustration, exhaustion, and loneliness overwhelmed those of gratitude, survival, and inspiration. It’s hard for me to hear too many of the painful stories and maintain my pathological optimism.

I especially appreciated the session about surviving and blossoming as a couple while caregiving led by Frank and Lisa Riggi – heartfelt, practical, and humorous. 10 Activities to do With Your Spouse Every Year – 10!, Only 10? I ask many caregivers, “How goes your marriage/partnership?” Faces fall.  Cathy Sikorski‘s keynote, Preparation, Frustration, and Surrender…Boldness Throughout Caregiving was an intriguing combination of hands-on, funny, and legal. Imagine you’re talking to the Cable Company. Be Bold!

Did you know that a third of caregivers die before their caree? Crazy?  Not really. Caregiving wears you down, while caregivers put their caree before themselves. Self-care: I loves that theme. This crowd seemed to self-care better than many.

The entrepreneurial spirit shone. My favorites: Carla Macklin’s Adaptive Clothing; Mekhala Raghavan and Angie Creager’s bathing aids and fall prevention (Waiting for production of their vibrating neuro-responsive fall prevention mat and their wash and vacuum the water shower anywhere system. I’ll try anything for fall prevention for myself and narrow doorway bathrooms are endemic in older homes); Quikiks Hands-Free Shoes (I’m always looking for easy, safe, comfortable shoes); and Shirley Riga’s book, “Tools for the Exceptional Parent of a Chronically Ill Child” published by Strong Voices Publishing.  Check them out! I love to hear what works for people. Solutions from the trenches rule! (I receive no compensation from anyone mentioned here.)

I attended as a panelist for The Family Connection: Supporting Essential Care Partners as Patients Transition to Home, with Geri Lynn Baumblatt, Mary Anne Sterling, and Cathy Crookston. Most nightmares I heard at the conference involved transitions to or from medical care. I did hear one story of the transition done very, very well. It can be done. If you’re lucky it’s because one person made a difference.  It shouldn’t be luck. Caregiving is hard enough.

Caregivers: How do you manage your marriage? When has BOLD worked for you? What’s the best transition you’ve experienced?

Honor the caregivers. Help the helpers.

From the Inside Looking Out

By | Caregiver, Clinician, Consumer, ePatient, Family man | No Comments

At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy.  Afterwards, someone at my table said,

From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.

I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team.  Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.

See also other posts about Improv and

Patient-Centered Outcomes Research Institute

Learning from What Doesn’t Work