Category

Clinician

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

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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

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

Give Me My DaM Data::Open Source

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

I’m sensing a harmonic convergence for data control by patients and their trusted licensed clinicians through Open Source. Could a Give Me My DaM Data revolution be upon us?

Give Me My DaM Data (Data About Me) has been a rallying cry of the ePatient Movement (ePatient = Empowered, Engaged, Equipped, Enabled) for quite a while. At the same time, physicians and other licensed clinicians express increased frustration – no, outrage – that the electronic health records support billing, not clinical care. See the National Academy of Medicine’s Care-Centered Clinical Documentation in the Digital Environment: Solutions to Alleviate Burnout.

For me, Give Me my DaM Data means

  1. Data that matters to me
  2. Data that I can understand
  3. Data that’s correct
  4. Data that I control
  5. Data I can use to make decisions with my licensed clinicians

In short: Everyone with permission from me sees the same correct, up-to-date data set.

Today, let’s consider #4 Data that I control

  • I can access it easily
  • I can track who or what is trying to see it, actually sees it, adds to it, changes it (history of use)
  • I can give and withdraw permission to whom I want
  • If there’s money to be made from it, I get some of it

Right now, data about me is controlled by EHR and health app vendors, hospitals, insurance companies, government, and companies with a business model that sells data about me – not me. Read More

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

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

As you may know from previous posts, I sit on a Center for Medicare and Medicaid Services (CMS) panel about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Jeesh! What a mouthful! In English, for me, this means, if Medicare is going to pay for value in health services, what is value? How will value be measured? How will value measures be created? And, should we care? We (people at the center of care – patients, clinicians, and those that support us) absolutely should care. First of all, we are the ones who are actually paying.  Medicare, Medicaid, and insurance companies write the checks, but their accounts are filled by us as taxpayers and employees.  The more money spent on healthcare, the less money is spent on our wages, public health, safety, everything. Hospitals and professional practices respond to how they get paid more than anything. When they are paid for volume – more treatment, surgery, days, and visits – they do more since it means more money for them. We know that more does not necessarily mean better for our health. The healthcare industry is creeping toward paying for value, not volume. Value should mean better medical care, better health, better relationships within our health teams, and better work life for those of us that are professionals. The definition and the measurement of value become critical. An example is readmission rates. Volume is paying for every admission. Value is not paying for a readmission to a hospital within a certain number of days. There are roughly 1,000 of such quality or value measures.

I want to share with you some of the recommendations made by the technical expert panel so far (this is from the second of four all-day sessions).  You can find the full report from the January meeting here on the CMS website, but it’s hard to get to the report, so I put it here to make it easier. I’m listing the recommendations below with my interpretation in italics of what they mean. Nobody at CMS or Battelle or the Panel has endorsed my interpretations. They’re all mine. But it’s no good if you don’t know what’s going on and I’m not sure if reading the report will help. So, here goes:

Recommendations

  1. Institute a governance process to help plan, develop, and manage shared measure testing resources. Measures need to be tested to see if they work. Working means that they measure what we want them to measure, that they measure the same thing every time, and that it makes sense. People developing measures use large sets of data to test to see if the measures work. Many organizations suggest measures, measure the measures, and publish the measures. This recommendation says that there needs to be a governance process (a clear and understandable way to make decisions) about how measures are tested. Right now measures are mostly tested using claims and electronic medical record data. It’s not enough. Data from patients and the experience of patients and clinicians are important too.  We don’t have much experience with using this kind of data for value. Lots of decisions ahead of us.
  2. Incentivize participation in measure testing. Everyone who creates measures won’t test measures out of the goodness of their hearts or because it’s the right thing to do. Incentives encourage people to test measures in new ways. Incentives for organizations can be similar to incentives for people. I am more likely to do something if it’s easier than not doing it; if it’s required with a penalty if I don’t; if people give me credit for my work; if I get paid or a discount on something else; if I get more business if I do it. You get the idea.
  3. Promote data element standardization and education. Measures are made up of data elements. A very simple measure is the fraction of females in a group (55% of the group are females). But it’s not so simple. How do you define the group and how do you define the data element, females? Is a female a person that can bear children, has two X chromosomes, self-identifies as female… What’s important with measures is that everyone using the measure defines it the same – there are agreed upon standards. A requirement to make the definitions and standards available for anyone to see helps too. Nothing hidden.
  4. Implement a framework with a long-term plan on how CMS will approach measurement.  Changes to the way measures are developed won’t happen by waving a magic wand. It takes time and effort by lots of people. Some things tried, won’t work. Something else will need to be tried. It takes a long-term plan, like retirement.  We need a picture of how the plan will move along and adapt to new knowledge.  That’s the framework.
  5. Institute an acceptable “quick path to failure” mechanism in the measure development process with well-defined steps. Developing measures is expensive and time-consuming. Whenever new things are tried, some don’t work.  We don’t learn to walk without falling. We need to know that something isn’t going to work as soon as possible so we can try something else. But if people are going to “fail early” they need to know how to do that and be paid for the work they do, even if it doesn’t turn out as expected. Again, incentives.
  6. To facilitate development of cross-program measures, consider a different organizing structure for measure development contracts/projects that cuts across programs.  Right now, most measures are diagnosis-specific for one setting (home, hospital, nursing home). But people aren’t their diagnosis and they spend time in many settings. Measures across diagnoses and settings are hard to develop. The science is young. They’re different and should be managed differently. As a patient, I care about this a lot.
  7. Provide funding for the development and implementation of a national testing collaborative. Changing how we develop measures is expensive and a risk. The government should pay for some of this experimenting with testing.  It’s an incentive.
  8. Develop an objective scoring system to evaluate measure testing concepts that are currently assessed subjectively such as importance, burden, and feasibility. Changing how measures are tested could end up like the Wild West- shooting from the hip, pretty wild, with those having big guns controlling the town. Having a scoring system (more points for helping patients and clinicians, more points if it’s easy to do it in many places, more points if I can do it the same way after you figure it out) really helps manage these new ways of testing measures.

Overwhelmed? No wonder. Me, too. I’m sitting at this table because I think it’s important stuff. I appreciate that CMS cares and included me. I respect the knowledge and passion of those around the table and they respect me. It’s government at its best. It helps when you understand this too. Even a little bit. Please ask questions, comment, and share. We’re pretty smart but not as smart as we think. We need your smarts.

Photo by Ashim D’Silva on Unsplash

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Appreciating Empowerment

By | Clinician, ePatient, Family man | One Comment

My wife and I spent some time trying to adopt a teenager after our son, Mike, died. We chose the adoption agency because, with them, the child made the decision whether or not to be adopted by us. The teen with whom we developed a relationship decided not to be adopted by us. Hard for us, but success for her! Empowered adoption. The clowns of Laughter League at Boston Children’s Hospital poke their heads in the room, May we come in? When the child says, No, you can’t come in my room, it’s success! Empowered hospitalization. Katherine Treiman at RTI shared an article with me about self-dialysis, Is “Empowered Dialysis” the Key to Better Outcomes? People connect themselves to their machines, draw their own blood, clean up the dialysis equipment themselves. More training time, lower mortality rates. Empowered dialysis, empowered hospitalization, empowered adoption. Wow. Radical. Controlling our own lives. A person, not a patient. What a thought.  I know the fatigue and stress when I feel powerless. My MS symptoms are much worse. I feel better when I’m in control. What I really like about empowered decision-making is that it doesn’t matter what decision is made. The physical, mental and spiritual benefits of empowered decision-making and care may be tough to measure. Is that because we don’t measure it or because we don’t know how to measure it? Still, we should practice it, appreciate it’s wonder, and learn to measure it.

Photo by chuttersnap on Unsplash

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WHAT RESEMBLES THE GRAVE BUT ISN’T

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

Photo by Lily Lvnatikk on Unsplash

Apologies for the duplicate post. I changed hosts and lost this post in the migration.

My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!

WHAT RESEMBLES THE GRAVE BUT ISN’T

Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”

~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.”  ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/

Eulogy

My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101.  Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee.  A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did.  She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.

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Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By | Caregiver, Clinician, ePatient | No Comments

My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list.  When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list.   The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More