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CMS: Use Patient Experts in Measure Development, but Don’t Pay Them?

By | Advocate, ePatient, Informaticist, Researcher | No Comments

CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach, in a fair and unbiased manner, for care that is likely to move me and mine toward best health. We, patient/caregiver experts, need a seat at the tables of governance, design, operations, and learning in the medical industrial complex to advocate for that kind of care.

I sat in one such seat (ten of twenty members represented the patient perspective!) on a CMS TEP (Technical Expert Panel). Here’s a blog post I wrote about it Oct 2017 and here’s the associated final CMS report. As I wrote in that post, Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians, and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.

The Panel completed its work in July and CMS just published the final report from the Panel. We did good work, our recommendations were heard!

 

Important to us, People at the Center of Care, are the following recommendations:

  • CMS should support measure developers, for example, by promoting the development of a toolkit to assist developers with patient and caregiver engagement. Companies and researchers that develop measures have just begun to learn how to engage patients and caregivers in the work of creating and testing quality measures.  They need a roadmap (toolkit). The toolkit should include project planning that includes patient advisors, orientation for patient advisors, guides that researchers can use to recruit patient advisors, communication tools that patient advisors can understand and find.  
  • Patients and caregivers need to be engaged in all aspects of measure development from priority setting to reevaluation. Just like in any aspect of health care, patient and caregiver experts need a seat at the table of governance, design, testing, sharing and learning.
  • Priorities for measures should be based on domains or conditions, not clinical settings or programs. Often measures are hospital-based or office-based. Yet, as patients and caregivers know, care occurs across settings and involves a team of professionals.  The measures should reflect that span of care. For example, rather than developing measures intended for hospitals or eligible providers, CMS would focus instead on a clinical domain such as osteoarthritis. In targeting osteoarthritis holistically, CMS can develop measures that track patients across the continuum of care they receive for that condition—developing measures that assess performance among the primary care providers, radiologists, pathologists, rheumatologists, orthopedic surgeons, and other clinicians that might be involved in the treatment of that condition.

The good news is that CMS has already published Requests for Proposals (RFP) about including patient advisors in the measure development process. The bad news is that these RFPs do not expect patient experts to be paid for their work by measure developers. Currently, CMS expects that participants in Technical Expert Panels work pro bono or be subsidized by their employers. Measure development companies, academia, and national advocacy organizations willingly have their employees volunteer with CMS since they benefit from the networking connection, early intelligence, and addition to their resumes or websites. They are still paid their salary for the work.  On the other hand, patient experts, included in measure development are usually not so employed and are not compensated for their time. This is not reasonable or equitable. Expertise has value and should be compensated. I am not paid for my work with CMS. I don’t care about padding my resume. I don’t need a better network – part of my value is my network. My time and skill are valuable. Oh well, one step at a time. PCORI gets it. We have more work to do with CMS.

Photo by Jordan Rowland on Unsplash

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2018 Healthcare Literacy in Research Conference

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

I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?

What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?

So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.

Here’s a sample of the best of what I heard and learned.

  • Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
  • One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
  • Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
  • Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
  • Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy.  In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
  • Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.

I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.

Photo by rawpixel on Unsplash

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Pain Management Choices: One Person’s Point-of-View

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | No Comments

Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…).  Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.

Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.

Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below. Read More

Stoking My Fires

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

Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!!  Too funny.  How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard.  When health dips, my spiel is BS.

My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?

Photo by Dominik Lange on Unsplash

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Medical Marijuana – A Strange Trip Indeed

By | ePatient, Researcher, Uncategorized | One Comment

I received my medical marijuana card from the Massachusetts Department of Health a couple of months ago. I hoped that I could find some additional solutions for cramping, neuropathy, or insomnia. It’s a different world from my 20’s. Then I wanted a recreational high. I never bought pot, just smoked what other people offered.  Now that I’m in my 60’s and part of the research industrial complex and the patient/caregiver activist scene, I find this exploration more than curious. The physician I saw for the card, didn’t give me a prescription. Told me about different modes of taking cannabis, a list of the dispensaries in the state, and left me with: People react with such variation. It’s an experiment. Let me know if you have any questions.  Imagine that for high blood pressure? I go to a pharmacy and say, I think I’ll try this…

I see on social media that many people rave about the positive effects of medical marijuana. They almost never say what strain, what route, what dose, what effects (intended and unintended), for how long, in what circumstances. Just that they’ve died and gone to heaven using cannabis. I celebrate that they found something that worked for them, but feel no assurance that it might work for me, or what actually worked for them.  I’ve reviewed two compilations of research, one from Canada and one from the US.   I picked a relevant, seemingly well done, study. I went to four different dispensaries run by three different companies. I asked an earnest young person across each counter about a specific cannabinoid (CBG, CBC, CBD, THC, CBDL, CBN) or terpene that I saw in a study.  They sounded very confident while answering my questions but their knowledge seems underwhelming. I did meet one young person (the last of four) who answered, I don’t know. My expectations had become so low, I was excited by the I don’t know.

I understand that marijuana is a drug and like any other drug or therapeutic, the relationship between rigorous scientific comparative effectiveness research and me as an N of one is tenuous. As my first neurologist said, I know what drugs might work for certain groups of people with MS under specific circumstances, but I don’t know crap about you. I need to get to know you and what’s important to you.  We will figure that out together.

I bought two different proportions of CBD/THC oil to vape, THC/CBD in peanut butter to ingest, CBD oil to rub on my skin over cramps, and CBD tincture to take under my tongue. Some of the ingredients are in milligrams, some in percentages. I bought a scale that measures micrograms. How do you compare mgs. and percentages? How do you compare smoke, tincture, oil, and peanut butter? It’s baffling.

I’m intrigued about this experiment of me taking medical marijuana. I’m trying to figure out how to keep track of what I hope to accomplish, what I’m trying, and what effects it’s having. I’m daunted. My spreadsheet is insufficient and too much work. I’m searching for and testing diary/journal apps. I spoke with a scientist friend of mine and together we’re skeptical that I’ll find what I need to conduct the experiment of me in a manner that I can keep up with. It certainly won’t be useful to anyone else. I’d love to be able to keep track of myself (patient-generated data) and have it feed into a larger data set of other people keeping track of themselves with analysts examining the data and us all learning together. I’m certainly going to need some help.

What a hoot. Never would have predicted I’d be here, doing this, at my age.  Stay tuned. I’ll keep you posted.

Photo by Jon Tyson on Unsplash

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Putting Patients at the Center of Pain Management Decisions

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Researcher, Uncategorized | No Comments

Clinical decision support researchers, developers, and implementers this is for you. Clinical decision support (CDS) technology can maximize trust and engagement during decision-making if used to its full potential. Or NOT. Consider the patient and family perspective in making choices about pain management and opioid use CDS.

We know that often, clinical decision-making depends on the relationship between patients, the family caregivers, and the clinicians they interact with. We know that time and life flow greatly impact that relationship. The patient appointment with a clinician often lasts 10-20 minutes – sometimes less, sometimes more. That time is precious. The clinical visit for patients and caregivers represents a drop in the ocean of their health management. Clinical decisions live amid housing, child/parent care, transportation, financial and other life decisions. It’s seldom one decision, but repeated decisions. Think of taking a medication three times a day or following a diet. Only a small proportion of clinical decisions take place during the appointment. Most questions about clinical care or following the agreed upon plan of care occur before and after a medical appointment. CDS technology can maximize trust and engagement to inform decision making, but the effectiveness depends upon the information that is presented and how the CDS is implemented (e.g., when and where it is presented, how it is presented, who it is presented to).

I am a member of CDS Connect, a team of academics, researchers, programmers, clinicians, clinical leaders, informaticists, policymakers, patients, and advocates. Our work is funded by the Agency for Healthcare Quality and Research (AHRQ). The CDS Connect Repository demonstrates AHRQ’s mission of ensuring evidence-based research is clearly understood and utilized in clinical practice, by codifying and freely sharing evidence-based standards of care as CDS artifacts. In 2018 we are supporting clinical care related to pain management and opioid use.

This article provides insights on the patient and family caregiver perspective in making choices (clinical decisions) about pain management and opioid use in the face of uncertainties. That perspective includes the range of engagement experienced by patients and clinicians, recommendations for artifacts that would help, and some design considerations when researching, developing, or implementing CDS.

Patients and Clinicians Manage Pain Together

While there are 46 words for snow in Iceland, English has far fewer synonyms for physical pain (e.g., suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness). Similarly, CDS that supports pain management should not take a one size fits all approach. Patient and caregiver engagement levels and perspectives vary as much as snow. Effective CDS artifact design and implementation understand this range of patient engagement:

Patient A: “I drive my own train”

I know my personal health and life goals. I’m the CEO of my health team. I trust my team. I want a plan to meet my goals and reduce my pain. I’m not afraid to lack knowledge.  I’ll get it eventually. I’d appreciate answers to my questions when I have them. I can keep track of stuff, but welcome tools to help me do that.

Patient B: “I’ll do whatever you tell me to do”

I’m trying to manage life. I go to the doctor when I have to.  I may or may not get along with the doctor. I don’t think he really likes me. I’ll try to follow instructions if I can [understand, afford, get there, remember]. Really, I prefer video, my reading of English isn’t that good. Maybe my grandson can explain it to me when I get home. I talk about medical problems [at place of worship], [at home], [with family/friends], [never]. In my culture, doctors are the boss.

And everything in-between.

 

And during all this, they are in pain. The severity of pain may impact people’s ability to engage with a clinician during an office, urgent care, or emergency visit. It is very likely to impact their ability to participate in decision-making and sort through all the information relevant to their condition.

Clinical care occurs in the context of a relationship between patient and clinician in an institutional setting (office, urgent care, emergency services). The variation in clinician engagement varies as widely as patient engagement:

 

Provider A: “What’s most important? My relationship with my patients”

I’m available when you need me. Tell me what you need and what you understood. Who is your care partner? Can you afford the care being discussed? I’m comfortable with choices, uncertainty, and risk and can explain it. I know when there’s a disconnect. I want to know and record the outcome of the decision we and others made. These CDS tools help me.

Provider B: “Just get me through the day, I’m so tired”

Here is a print-out with instructions. I’ve only got 7 minutes for this visit. I’ll get dinged if I don’t check the right boxes. What do you mean, you didn’t follow my instructions? Really, who cares? Where do these people come from? What am I supposed to do with this pop-up or instruction? It’s disruptive. I’m spending too much time in the EHR already.

And everything in-between.

 One size does not fit allCDS may be most effective when designed to match the level of patient and clinician engagement. Well-designed CDS that presents relevant information to the right person, when they need it, in a format that is useful and easy to understand, via the right channel (e.g., an EHR, a patient portal or perhaps a mobile app) is a feasible and realizable approach to bridging some of these divides – whether based upon motivation, skill, experience, or culture.

Patients could use your help to manage their pain, in partnership with their clinicians

Imagine CDS delivered via an app or a patient portal that is available 24/7. The “tool” displays a pain management dashboard comprised of the following information:

  • Treatment goals – including physical function, behavior modification, and any associated milestones
  • Plan of care – who’s doing what and when are they doing it (including the patient, their caregivers, clinicians, and ancillary care team members). This includes a calendar view of the plan of care, to more easily track and act upon each entry.
  • An up-to-date list of all care team members (including the lead clinician for pain management and caregivers) with contact information and preferred communication methods and hyperlinks
  • Links to moderated information and social resources tailored to the patient

This dashboard could support both patient perspectives described above – the “take charge” patient who wants as much access to their information as possible and the “tell me what to do” patient (or their caregiver) who might benefit from the information as a reminder of the plan of care. It also supports the patient’s clinicians by placing the patient in a better position to agree upon, track and comply with their plan of care.

Other patient-centric CDS tools may include:

  • A pain tracking app integrated with the EHR
  • Reminders of tests, activities, behavior modification plans, or prescriptions along with their status and any actions needed
  • Mobile health technology used to present CDS, such as Telehealth or mobile apps
  • A display of treatment options, the circumstances that led to those options, and the option chosen

Your Efforts Can Influence CDS Engagement, Acceptance, and Effectiveness

Patients, direct care clinicians, and those that support them need to have a seat at the table from the inception of the CDS – and provide their input during research, design, development, testing, implementation, and evaluation. Simple, intuitive, user-centered design is critical to acceptance and usefulness. Well-designed artifacts are developed with an awareness that frequently, the work of using these tools falls to caregivers and clinical support staff. Effective CDS is designed and implemented to support both patient preferences and clinical workflow. Rich involvement of all people at the center of care allows for consideration of their varied preferences, abilities, life flows and workflows, thus improving the adoption, impact, and usefulness of CDS.

This article seeks to provide insights into the patient and family caregiver point of view while making choices about pain management and opioid use. It accepts that one size does not fit all and considers the range of engagement experienced by patients and clinicians. It provides recommendations for CDS artifact development through actual use. The key is involving the people at the center of care in all phases of CDS development and implementation, including patients, their caregivers, and direct care clinicians. Embracing these strategies helps to ensure that ultimately, CDS will positively impact patient health outcomes.

Photo by Stefano Pollio on Unsplash

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MS: My Door to Peak Performance

By | ePatient | 6 Comments

It’s been a strange week post-infusion.  The infusion wore me down. My pathological optimism took a hit. Mood has its ups and downs in the best of circumstances. Although I mostly live up, the human condition is variable, jagged, up and down. I don’t dwell much on my Multiple Sclerosis. It’s seriously annoying, but I am not Multiple Sclerosis. This week I can’t shake having a progressive illness, especially during the witching hour from 1 am to 4 am. I saw my physical therapist. She told me I’m progressing very slowly. 2-3% a year over the past five years since she started recording the Boston University AM-PAC™ for me. Sheesh, that’s pretty specific. Slow, but still progressive. Walking’s my biggest challenge, as you know.  I’ve gone from walking slowly unassisted to walking better and safer with a cane.  Now it seems like I need two canes when I’m feeling less strong and on uneven surfaces. Plus I started using an electric wheelchair when I’ve exceeded my endurance limits. A month or so ago I graduated to a trike with 27 instead of eight gears when I noticed I was living at gear 2 on slight inclines. Ten years ago I set a minimum target of 3500 steps a day. I actually averaged 7500 steps a day five years ago but kept the minimum of 3500 because I so like to exceed expectations. Even my own. Now I average 4500 a day.  I’ve only missed a handful of days at 3500 steps in the past 10 years – once when I had pneumonia, and several immediately post infusion.

I don’t share my demons for your sympathy. We all have demons, in different flavors. I share my demons to highlight my goal of operating at peak performance. I used to think of peak performance as something athletes did. Serena Williams, one of my athlete heroes, lives at peak performance. Peak performance is a moving target for everyone as circumstances change. For Serena, the moving target has been age and pregnancy. For someone with a progressive condition, like MS or aging, peak performance is also a moving target.

Peak performance depends on equal shares of genes/biology, circumstances, effort, and luck. I’m a white man born with pathological optimism.  Those are genes. I did nothing to get them. They’re gifts. So is the MS. Circumstances are that I live in the US, I have access to many modes of transportation, our water is clean and clear, and electricity is plentiful. We can take advantage of circumstancesEffort is my routine of diet, exercise and stress management, loving my family, feeding my network, showing up. I choose to put in the work. Luck is that I met my wife and that both my sons settled in Boston. I’m thankful for luckEffort is that my wife and I pulled up stakes and moved from upstate NY to Boston when our sons settled here.  Circumstance is that Boston has many choices for healthcare delivery so I can pick and choose. Make sense?

It’s actually fun, curious, gratifying and hopeful to reveal and assemble the pieces of the peak performance puzzle.  I never appreciated how much work it is nor how rewarding. It takes a team to live at peak performance. I have a great team.  That’s circumstance, effort, and luck.

My mission expressed in my brand, Health Hats, has been to empower people as they travel toward best health.  Lately, I feel like I’ve lost touch with the essence of empower. It’s been feeling arrogant. I’m not giving anyone anything.  I’m not liberating anyone. I have no magic sauce, silver bullet, elixir, wand, pills or buds for empowerment. Maybe empower means that I’m participating in someone’s work to operate at peak performance. As a guest or a teammate, of course. OK, I can live with that.

Multiple Sclerosis opened my door to peak performance. Thanks for stepping through that door with me. Quite a ride.

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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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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