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Data | Danny van Leeuwen Health Hats - Part 3

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

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?

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Last Post, New Year

By Caregiver, ePatient, Clinician, Leader, Consumer, Family man, Musician 2 Comments

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Improving experience – decoupling a moving train?

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

I’m puzzled when people rate highly (very satisfied or satisfied) their experience in clinics and hospitals while still complaining about the experience. What is in the overall rating (would recommend)?  Is it a comparison with other experiences that weren’t as satisfactory, yet annoyances still occurred?  I have spoken with people and caregivers who say,

this experience was one of my best, but that’s not saying muchNone of them were very good. Or seeing the nurse practitioner was great, but it’s impossible to make an appointment that’s convenient to my life. One organization I’ve worked with asked people and caregivers what matter most to them in their experience. They said, we want to know when there are staff changes: they developed a good relationship with a clinician or a direct care staff person and that person leaves the practice. When a question about that was added to the questionnaire, the scores dropped.  Who knew they cared? Some organizations stop with high scores and don’t look further. It’s hard to keep up the routine of running the office or unit and still find time to listen in different ways (rounds, focus groups, referring concerns to someone with time to listen).  It’s also hard to have time as people and caregivers to find someone who will listen to your concerns. I have to get to work or school or I’m not really sure what’s bothering me about this experience but I’m unsettled.

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What’s the Problem with the Experience of People at the Center of Care?

By Advocate, Caregiver, ePatient, Leader, Consumer, Family man One Comment

Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey.  At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I’m reminded that not everyone is so lucky. As I scan the industry several problems with the experience of the people at the center of care (patients, caregivers, clinicians, direct care and support staff) jump out: Read More

Notifying me when accessing my health data

By Advocate, ePatient, Leader, Informaticist 4 Comments

Why don’t I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I’ve authorized. My bank proactively let’s me know when they suspect fraudulent charges.   But I have no idea when someone opens, adds to, corrects, uses, sells my health data.  I’m pretty much an open book, even pathologically open. After all, I blog about anything.  I still would like to know who’s using my health data. If I knew I may be less open. I may still not care. I know data is big, big business. Social media data, Amazon data, health data.  It can’t be because it’s not technically possible or too complex. I don’t think I want to interfere with that big business (why try?), but it doesn’t interfere for Facebook or my bank to keep me posted, so why would it interfere for my health data.  If the federal government is paying billions to support the electronic health data business through meaningful use incentives, why don’t they require that we be notified of our health data use? Health data sources (hospitals, insurance companies, researchers, etc) spend millions if not billions to prevent hacking, yet hacking occurs regularly. More than 30 million records hacked a year! It takes a long time for companies to discover hacking – often not until thousands of files are hacked.  Seems like I could identify health data hacks sooner and then tell the entity that’s hacked.. Wouldn’t I be flooded with notices every time I went to the doctor or went in the hospital? Not if I could authorize access and permission and even assign other people, clinicians,  and hospitals to authorize on my behalf. My authorizations could be stored on a server accessible to me and accessible to those wanting to exchange my data.  I could go to it to track authorization, change what I allow to whom. What would take for government and industry to want to accomplish this? Is there a threshold of hacking or fines? When I review the literature, little discussion occurs beyond better encryption, more rigid password protection. Why not?  Does this matter to you?

Driving our health journey – writing the story

By Advocate, Caregiver, ePatient, Informaticist, Consumer No Comments
For individuals to drive their own health journey we must have the key to the ignition, be in control of the accelerator, the brakes, the steering wheel, and be able to see the full dashboard of cues about ourselves. At the same time we need to control access of passengers, be able to give the keys to whoever we choose, deny access to whomever we choose, and trust those who take the wheel for us.
We also need to be able to read, share, and correct the story about our journey. We need to contribute our chapters – our destinations (goals), our lists, our tracking, our feelings. If we want to, we need to be able to ask others to contribute chapters. We need an eBook version of our story that we can edit and share portions we choose with anyone we give permission to read it. With many people and reports about us, contributing to our book, chances are some of it will be wrong. Wrong person, wrong time, wrong diagnosis, wrong, wrong. We are the only common denominator of our story. We need a way to correct the errors we find. Our lives could depend on it. We are the single source of truth about our story.
I love puzzles: This is the puzzle of many lifetimes! I’m driven to contribute to solving some of this puzzle. Last week based on a recommendation of a fellow member of the Society for Participatory Medicine, Adrian Gropper, I joined a group, OpenID-Heart.
The HEART Working Group intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others 
 
What does this mean?  Many people and interests throughout the world are working on solving the puzzle of privacy, security, and health data sharing. An API makes it possible for computer programs to talk to each other and share data. REST means that the API can expose something the software does while protecting other parts of the application. Health data is big business and very personal. The voice of the people at the center of care is critical.  I attended my first weekly hour-long meeting. While much of it was technical and over my head, I joined because someone asked about patient goals. I’ve never heard techie’s speaking about patient goals. To me that’s, What am I, are we, trying to accomplish on my health journey?  Certainly end-of-life choices is one, but more often it’s less pain, less fear, more fun, managing my meds, hanging with friends and family, fitting in my clothes, getting to work, getting to the doctor, having love in my life. I think I’ve died and gone to heaven.  I’ll keep you posted.

 

Talking about Uncertainty

By Advocate, Caregiver, ePatient, Clinician, Leader, Informaticist, Consumer, Family man One Comment
How do we people at the center of care speak about uncertainty in health among ourselves? How does uncertainty even come up in thought or conversation? I feel [fill in the blank]. Sometimes we feel poorly and speak to no one – the conversation is in our heads. Sometimes we feel poorly and seek advice about how to feel better from people in our network including healthcare professionals and non-professionals. Naturally, the person in distress and each of the people in that network have different information, knowledge, tradition, experience, and expertise about the distress and how to make it better. These difference occur within the groups of people: doctors can disagree, loved ones can disagree. Sometimes better means different things to different people. For example, when I have pain, better could mean
  1. I want the pain to go away completely, now,
  2. I can live with a level of pain that allows me to complete my activities of daily living (bathing, cooking, transportation, etc.),
  3. I want to go to my daughter’s graduation in spite of the pain,
  4. I want to feel less anxious about my pain,
  5. I can live with pain that doesn’t interfere with my ability to think or write,
  6. I just need to get some rest.
The are times we act alone. Other times we may not know what to do and we talk about it with someone at the center (that person could be on our health team or not). Or someone may see that we’re in distress and tries to help us figure out what to do.
We could be certain (sure) that a particular action will work – pill, treatment, food, activity. And it may or may not work. I’m sure that these pills or treatment will make my pain go away. The pills or treatment may or may not make the pain go away – for an hour, a day, or forever.
Geeze, this certainty / uncertainty thing can get complicated. We haven’t even talked about when we feel fine and someone suggests we change our habits – stop smoking, lose weight, be less grumpy. I will continue this exploration of uncertainty in weeks to come.

Uncertainty and Comparative Effectiveness Research

By Advocate, Caregiver, ePatient, Clinician, Leader, Informaticist No Comments
Last week’s post  began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us – family, friends, health care professionals. But isn’t health science-based?  Doesn’t research inform that science? Scientists knows that knowledge is never complete and that research can do no more than produce estimates of what we think is happening. Science, is in part, about odds and not facts. A particular medicine to be effective in specific circumstances for specific populations.  Unlike comparative shopping for a car or a toaster where I can go to Consumer Reports, health care is not so easy. There are so many medications to take for Multiple Sclerosis or high blood pressure.  Which should I take? This research is called comparative effectiveness research.

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