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ePatient

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

Expanding Engagement and Capabilities of People at the Center

Engage! Will patient engagement achieve “warp speed” this year?

May I Have Some – Time? Please

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

Related posts

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Managing Pain

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

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

Helping Hands Everywhere

By | ePatient | 2 Comments

I took my foldable electric wheelchair solo on my trip to Philadelphia this week. My last solo wheelchair experience was in New York City in 1977 when I took a course at NYU’s Rusk Institute of Physical Rehabilitation. On the second day of the two-week course, I spent the whole day in a wheelchair by myself.  It was terrifying. I got stuck in a pothole crossing Fifth Avenue during rush hour.  The ground rules were, never get out of the chair. A homeless woman ran over and pushed me across before I got run over by the honking yellow cabs. On Tuesday, in Philly, I got stuck again in a small sidewalk pothole and a man, sitting on the curb with an “I’m homeless” sign came over and pushed me out. I saw him again on my way back from the restaurant. I handed him $10 and thanked him for helping me. He wouldn’t take it, I was just helping you out. I thanked him again and told him, you helped me and now I’m helping you. He took it. Read More

2+2=what?

By | Advocate, Caregiver, Clinician, ePatient | No Comments

Alice’s blood pressure is 110/50 right now. That’s a data point. Her blood pressure, untreated, lives around 150/90. She’s prescribed medicine for it, but she ran out last week and doesn’t get paid for a few more days. When she stands up, she gets sweaty and feels like she might pass out.  That’s a bunch of data and a story. Hopefully, the data and the story are given meaning (processed, analyzed, interpreted) by someone with Alice who has medical experience and skills and leads to information about her safety. Alice might have orthostatic hypotension. She probably should sit down, for now, refill her prescription, and get some medical help.

So, the 110/50 (a single data point) doesn’t mean much by itself. Multiple data points + stories, when processed, can lead to information.  Information leads to choices which can result in action. Data and stories about Alice are collected by her, others, and machines. She might be able to interpret data. So can others and machines. Most action taken as a result of information about Alice is done by Alice. She can’t write a prescription, but she can take it. She can sit down and elevate her feet. She can seek medical treatment.

Some people and their clinicians are drowning in data and can’t breathe, let alone learn from that data. My OpenNotes record from my neurologist is full of data. Unfortunately, even as a nurse, I understand very little of the note. I want some simple information from the note. How am I doing? I have a progressive disease that will get worse. Am I getting worse? Five pages of data in a note and I can’t tell.  I asked my neurologist to explain it to me.  He did. Took about three minutes. Turns out the Expanded Disability Status Scale buried on page 4 was the key. I have moved from 5.0 to 5.5 on the scale in the last two years. He used it to support my claim for disability payments.  But wait, that’s not right, I can’t walk 100m without my cane.  Oh, he says, then you’re a 6.0. Worse than he thought, but now we know. That was an example of missing information (for me) and erroneous information (for him). Let’s not forget biased information. That’s a subject for another day.

The person-clinician relationship feeds on a  two-way loop of data, stories, and action about the person receiving care and support. The art for my clinician team members is to help find, share, and interpret data about me and about groups of people like me (old, affluent, white men with Multiple Sclerosis, high cholesterol, food on the table, who have insurance, a home and family), combine them with stories about me, to help me make sense of it all. So I can do something with the information that makes sense to both of us.

So, I still want my DaM Data (Data about Me). But it’s no good without transmogrification (great word!) into information that I can use.

Photo by Gaelle Marcel on Unsplash

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May I Have Some – Time? Please

By | Clinician, ePatient, Informaticist | 2 Comments

Best Health depends on relationships -relationship with my health team, my relationship with myself. We can accomplish much in these Best Health Relationships. We take stock, tell stories, complain, report, plan, decide, learn. These relationships impact our spiritual, mental and physical health. Relationships take time. Time as in arriving (scheduling, traveling), being present and accomplishing something (catching up, problem-solving, planning what’s next). Time is key to these Best Health Relationships. Early on in relationships, to establish a connection, a language, a trust, in the relationship, it’s either longer spans of time at each sitting or more frequent sittings.

During my first visit with my neurologist, he said, I know a lot about drugs and therapeutics for Multiple Sclerosis, but I don’t know anything about you, except your brain scan.  My job is to get to know you. Your job is to learn about Multiple Sclerosis. Our visits were often long – 45 minutes, an hour. Soon we developed a short-hand and routine. What’s on your list? This is on mine? Wait, I think we missed one thing on your list. OK. We decided I’m going to do this, you’re going to do that. Text me to let me know how it went. Ten-fifteen minutes tops. A new clinician starts the cycle over.  Build a relationship. Sometimes there’s no chemistry. Then the time (of any length) is mostly wasted, ineffective, especially if I’m in any distress, which is often. Read More