Power, Fear, Lack of Empathy

By | Advocate, Family man, Leader | 6 Comments

Photo of Ruth and Ruben van Leeuwen circa 1947

I was riding my trike this morning at 6:30. It was beautiful, dry, cool, few people out. My pathological optimism has escaped me.  I needed serenity following my recent MS infusion. I was hoping that I’d find clarity for the post I started yesterday about health data, health research, learning, and adjusting. I’m underwhelmed by our collective ability to learn and change based on experience and evidence. Where do I go with this germ of a post?

But no, I’m getting more and more agitated with every pedal. First, immigration and refugees. Then Brett Kavanaugh’s Supreme Court nomination. I can’t shake it. No serenity, no nifty pearl for my post. Just escalating sickened outrage about power, fear, lack of empathy and its effect on our community well-being. Deep breaths, mindful meditation have no effect.

My parents, both Holocaust survivors, were not religious. But I heard Love thy neighbor as thyself often and I watched them live it.  My mom, when she finally began to speak about her experiences in hiding, emphasized her gratitude to the people who hid her at great risk to themselves. She would say, I wasn’t brave, they were.  I just survived. They were the heroes. The Trump administration is determined to wipe out immigration – both legal and illegal. It makes no sense to me. It flies in the face of decency, empathy, common sense, and evidence. Since this is a healthcare blog dedicated to empowering people as they travel toward best health, I’ll stick to that lens. Most people want to live the best life possible with their families, contributing something to their communities. This I believe. If they can’t be safe in the home, they want to move if they are able. If they can’t be safe in their countries, they want to emigrate. Even in the face of great risk. We in the US are fortunate.

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

So we do the work to assimilate! Is that so hard? It’s moral, ethical, empathetic, right. Practically, the fastest growing occupations in the US are home health aides, personal care assistants, medical assistants, software developers, nursing assistants, and registered nurses. All positions facing shortages.  All positions affecting our communities’ health. Who do we think is going to take care of us and develop tools that support our care as we age? Immigrants.

Second, Brett Kavanaugh’s Supreme Court nomination in the face of accusations of sexual assault. Again, outrage about power, fear, lack of empathy and its effect on our community well-being. Our Senate Judiciary consists of old white men without lived experience of assault and powerlessness (or they haven’t come out yet). Maybe the most powerful office in the country with a lifetime appointment affecting the wellbeing of all of us.

OK, other people can opine on these topics better than I can.

For me, the central feature is power – the imbalance of power. Those in power want to stay in power at all costs. I think it’s a human condition of the ages. Evidence, curiosity, empathy, have little role. We know that this imbalance of power is evident in our healthcare business practices and our healthcare decision-making. Fortunately, I still have a reservoir of pathological optimism. My parents lived through the Holocaust, the country survived the Vietnam experience. I believe that there are cycles of learning and relearning, and relearning again. I believe that the response to power imbalance is to get more people with lived experience and less power a seat at the table, especially the tables of governance.  For immigration and our government, our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth. Please vote and help your neighbor register to vote.  And I’ll get back to my advocacy to bring more people with lived experience to the tables of governance, design, operations, and learning in healthcare delivery, business, research, and technology.

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Patient Engagement – Careful What You Wish For

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | 2 Comments

I’m often asked about my take on patient engagement. These buzzwords are losing their meaning. Frankly, I find myself at a loss to answer, even though I say patient engagement is my passion. Engagement from whose point of view?

  • A person engaged in their own health – Isn’t everyone engaged in their own health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s  It’s all engagement. I’m engaged in my own health. So maybe that’s not the question.
  • A clinician engaged in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health. What if it’s not about his engagement with me?
  • A patient engaged by adhering to their clinicians’ prescriptions and medical plans. Certainly, a paternalistic and common view of engagement. I’m engaged when I follow all instructions whether I understand them, can afford them or can get to them. Wait, maybe it’s not about the patient-clinician relationship at all.
  • Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the center of care (patients, direct care clinicians, and the people that support them) sitting at decision and learning tables like boards, advisory councils, departmental meetings, product design sessions, insurance company business meetings.

The challenge of giving a serious nod to patient engagement is that few of us are really prepared for success. Being super engaged in my own health means that I’m the CEO of my health team and that I manage myself and my subcontractors well. It means that I have a care partner that can step in when I can’t – a succession plan. It means that I do everything I can to operate at peak performance.  All while I’m sick or disabled:( The clinician engaged in their patients’ health means that they solicit and accept their patients’ expertise and they have the humility to accept how little expertise they have in non-drug, non-surgery treatment, or actually, much outside their specialty – like the reality of people’s day-to-day life challenges. Increasing patients’ engagement in governance, design, operations, and learning leads inevitably to pressure for transparent price lists before service, seamless transition from one setting or clinician to the next, on-demand self-scheduling, patient and clinician controlled health data sharing, access to and payment for non-drug, non-surgery treatments, funding research about outcomes that matter to people, and on and on.

I think we need to be more specific about what we mean by patient engagement. And be careful of what we wish for.

Photo by Fineas Gavre on Unsplash with text added by Health Hats

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Advocacy Pearls

By | Advocate | No Comments

Someone asked me for my pearls of wisdom from my journey as a patient/caregiver activist. Pearls? Wisdom? Well, here goes:

  • Show up, listen, then speak up.
  • Do your homework – prep for calls and meetings.
  • Keep asking questions until you understand what the group, the research, the treatment, the service is trying to accomplish for whom. Then think, “So what? Why should we care? How does this affect us?”
  • The people around the table who don’t identify as patients or caregivers don’t know as much about life as you do.  They specialize in whatever. You specialize in the journey – in the impact of the policy, the technology, the service, the setting on real people.  You are as much of an expert as anyone else.
  • Open doors for more patient/caregiver experts. As expert as you are, you’re one voice.
  • Deliver on your commitments. Under commit, over deliver.
  • Build your network – Google or LinkedIn attendees and add them to your network/contact list.
  • Leverage your network – they understand asking for help.
  • Feed your network – support others as much as you’re able, whenever you’re able. You’ll learn something, create goodwill, and release endorphins.
  • If it feels like wasted time, it is. Vote with your feet. You only have so much gas in your tank.
  • Failure is precious. Learn from it.
  • Have a blast.

I’m only pretty good at this stuff. What are your pearls?

Photo by Jon Tyson on Unsplash

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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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More: Journal for Best Health

By | ePatient | No Comments

Julie Holliday, a reader of last week’s post, wrote:

I found this post very difficult to read. It sounded so interesting and I wanted to consider sharing it but just got lost in the dense sea of words. Could you consider making more paragraphs?_______________________________________________________________________

Ok, Julie. Here goes:

I seek best health for myself and others. I define best health as operating at peak performance as often as possible over time.  It’s living the best life possible given my genetics and biology, social circumstances, and physical environment – all of which are either out of my control or I have limited control. I can’t change my genetics, but with great difficulty, I could move somewhere else (physical environment). With less difficulty, I could increase my mobility with a handicapped public transportation pass (social circumstances).

However, sometimes I can control my medical care and more often I can change my individual behavior. Still, these are not easy and require planning, experimentation, and effort. The problem with chronic illness is that the opportunity to be thoughtful and try stuff out can be rare and short. Read More

Journal for Best Health

By | ePatient | 5 Comments

For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel.  I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Read More

Photo by Elijah Hiett on Unsplash

National Action Plan to Better Manage Pain

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Researcher | One Comment

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

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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What Do You Do for Fun?

By | ePatient, Musician | One Comment

Yes, you concerned readers, I’m still playing my baritone saxophone. I’m taking lessons every two weeks via Skype. No travel time! I’ve upped my playing to 4-6 hours a week. More structured, too: scales, chords, simple rhythms. I still lose my place improvising, a lot. But I’m less in my head, thank you very much, what a relief. I’m paying more attention to my sound. I love the sound of the bottom (the bari sax is very low). I’ve changed my mouthpiece and reeds.

Devoting time to self-care – pretty fascinating in its own right. A stock question when I talk with people: what do you do for fun? Quite fascinating, try it. Knitting, dancing, jogging, singing, grandkids, soccer, hiking, needlepoint, painting, riding horses, writing, yoga, traveling. My ability to predict what a person does for fun is marginally better than my Lotto predictions. Some say I don’t have time for fun. Or, I’m ready to retire, don’t know what I’ll do. This makes me sad. Very sad. Read More

Photo by Ashley Batz on Unsplash

Patient Ownership of Data?

By | Advocate, ePatient, Informaticist | 6 Comments

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.

What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.

Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me): Read More