Category

Informaticist

Scared?

By Advocate, Caregiver, ePatient, Clinician, Leader, Informaticist, Consumer, Family man 3 Comments

My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: “What works for me when I’m scared and what doesn’t?” You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed in the ER. In 5+ years of advocacy I’ve been unable to generate interest from IT wonks. Anyway, I was whining about my ineffectiveness to Phyllis.

So let’s break it down a bit more. I’ve never met anyone in an unexpected health situation who wasn’t scared. Scared looks like: startled, numb, stomach ache, sweating, heart racing, catastrophizing , panicked……

It’s good to know in advance what helps settles me down. Deep breaths, meditation, hold my hand, a good laugh, quiet, a walk, listening to John Lennon, my wife and family, more information, respect from those around me plus listening to me, Ativan. My mom needed a hand to hold, control, opera. My friend needs someone from his immediate family and information, reduced stimulus, quiet, to be kept warm, headphones with classical musical. We all can use something. The unexpected health care situation can vary. My chronic condition, MS, could flare up – known yet unexpected.  You could break your leg – an accident plus pain. You could have a heart attack or kidney stones – sudden, debilitating, with pain. You could be alone or with someone you trust – very different scenarios. Read More

A Roller Coaster of Love

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

225 weekly blog posts.  How do I do it?, a reader recently asked me. The health journey provides me endless material: fascination, intrigue, tragedy, empathy, frustration, wonder, curiosity, fear, and inspiration. As a nurse I’m blessed to participate in some of people’s most intimate moments as a guide, helper, ear, hand holder, and translator. As a team member and leader I study the puzzle of how people think, emote, decide, and relate trying to get anything done safely and ethically in the most consuming, illogical, nonsensical, complex system imaginable. My palette includes the desire and dilemma of habit change, the tangled web of cultures, the enticing potential and hype of technology, the flood and inaccessibility of data, the vital impossibility of policy change, and the insane contradiction of money surrounding,  driving, tempting, confounding health. Can I tease out the simple and illusive filaments of the magic levers of best health? What works, how do we know? How do we find, share, and use evidence? How is uncertainty communicated, how does information about groups of people relate to me, a single person?  I love sharing my broad and thin knowledge of health as a coach and a writer. As a person on my own health journey, writing this blog stokes my fire – feeding and renewing my pathological optimism. Actually, I start with a nut of an idea, sit down with that idea on Sunday and write. Takes about an hour. I used to read the drafts to my mom, now my wife. It never turns out the way I think it will. The post writes itself. I’m an old hippie – at the end of the day the health journey is a roller coaster of love. Thanks for the ride.  See you next week.

This week my son, Mike Funk, would have been 40. Lord, I miss you, Mike. You still inspire me. You’d be proud of your seasoning family.

Clinical Practice Guidelines – Oh My Aching Brain

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

Last time I saw my Primary Care Provider I asked if I needed to keep taking my Crestor, a drug to reduce cholesterol. She pulled out the clinical practice guideline for the treatment of blood cholesterol released by the American College of Cardiology and the American Heart Association. Every couple of years I ask her the same question. Do I really need this? Does it have long-term side effects I should worry about? I’m 63 years old, when can I stop because I’m too old? With insurance it costs me $300 a year out-of-pocket.

How many clinical practice guidelines are there? I could find no specific count – thousands I’m sure. The Agency for Healthcare Research and Quality (AHRQ)’s National Guideline Clearinghouse lists 1975 guidelines.

Who writes guidelines? What is the evidence to support guidelines? Which guidelines apply to me? How often do guideline writers  rewrite them when new evidence comes to light? How long does it take for people at the center to become aware of guidelines and use them? Read More

How many words for pain?

By Advocate, Caregiver, ePatient, Clinician, Informaticist, Consumer 4 Comments

There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing?  The more descriptors I tried to come up with, the more frustrated she became with me.  No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success.  Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed.  I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain? Read More

Changing habits – for people and payers

By Advocate, Caregiver, ePatient, Informaticist, Consumer No Comments

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change.  I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe.  I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Read More

Not collected? Not studied.

By Advocate, Researcher, Caregiver, ePatient, Clinician, Informaticist, Consumer 2 Comments

What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:

  • What does feeling worse (or better) look like?
  • What works for me when I’m in pain (or scared)?
  • Where will I sleep tonight?
  • Are my kids safe? Am I?
  • Am I treated with respect?
  • Do I understand what doctors and nurses say to me?
  • Where do I go when I have a question or I forget what I’ve been told?
  • How do I get food from the grocery store?
  • How much can I afford out-of-pocket for my medicine?
  • What are the most important things in my life, for my future, for my health?
  • Can I live with this amount of pain or discomfort or indignity?
  • Do I have access to a computer or a phone?

Read More

What’s Pokeman Got to Do With It?

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

I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English, and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language, someone would raise their hand and there was cross-translation by the 2 or 3 people who spoke more than one language.  This repeated for about an hour.  I went home and my 7-year-old grandson tried to teach me to play Pokémon.  I understood less than I did in Chinatown.  Opa, you don’t understand this at all!! Read More

#Innovation and #Mentoring

By Advocate, Caregiver, ePatient, Leader, Informaticist, Consumer One Comment

I’m attending an Entrepreneur’s Think Tank at the local Career Center and the Tech Sandbox in MA’s MetroWest region. I helped start something in 2012 called Pain Points in Healthcare Mini Unconference, now Healthcare Innovators. Each of these groups assembles people with bright ideas trying to set up a viable business. Often people with more passion than practical knowledge seeking to fill in their gaps.  I am 63 years old, seasoned with energy, ideas, connections and yes – gaps. I’m older, good at what I do, and still in need of mentors and coaches. How else will I stay good at what I do? Searching for, finding, and offering mentoring is serious fun. Read More

Patient Reported Outcome Measures (PROM)

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

When I first heard about Patient Reported Outcome Measures (PROM) I thought they were talking about pulse, blood pressure, weight, pain, anxiety. I didn’t start exploring further until 2012 when I was on the federal government’s Blue Button Initiative – clicking a button in your electronic medical record to download information from that record into human or machine readable form. I was on the Content Task Force. I cared about what information was to be downloaded. Based on comments I had received from you readers, I tried to get the Task Force to add what works and what doesn’t, when I’m scared or in pain. No luck, as if I was speaking Klingon. That started my exploration of PROM in England’s National Health Service. The National Quality Forum published a report in January 2013 about PROM. PROM’s have been developed for depression, pain, sleep, joint replacement. You can see an example on a Dartmouth web site called https://howsyourhealth.org/ where you can do a checkup of your general health and health risks.

PROM can be used for an individual or for populations, just like any research.  For people, the challenges is having the chat with your primary care provider. Will they have time? Will they engage with you? For populations, the challenge is the methodology.  Will everyone do it the same? Is it filled out only by people who have the knowledge, language, motivation to enter data? What about people who need their parent, neighbor, caregiver, child to fill it out? This is an exciting puzzle. I need to learn more.

Burning out professionals, oh my

By Advocate, Caregiver, ePatient, Clinician, Informaticist, Consumer No Comments

Several readers commented about  the disruption of revolving door members of their professional  health team – those leaving a practice, with or without notice. One asked, why can’t organizations keep compassionate people-centered professionals? A good question. It takes time and effort as an e-patient to develop good relationships with professionals. When my clinicians have moved on, I am greatly stressed and my health is challenged. I was at a meeting recently of the Lown Institute, a predominantly physician group of burnt out or burning out docs committed to people-centered care. The main beef seemed to be with administrative burden / electronic record edging out face-to-face time between people and clinicians. Read More