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EMR | Danny van Leeuwen Health Hats - Part 2

Health Planning Over a Lifetime

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

appalachian-trail-chrisbianchinj-by-michelepapaleoThree weeks ago I wrote about navigating our experiment of one. This navigation is health planning over a lifetime. Health Planning over a Lifetime includes having destinations or goals and deciding what needs to happen to get there. Who’s going to do what, by when? How will we  recognize when we’ve arrived. It helps to anticipate risks and barriers (those unexpected forks in the road), and have a plan to prevent or manage those unexpected forks. We’ll want to track and share progress. We need a table to sit down and process what we’ve learned, so we can change course when necessary. The health and wellness industry hasn’t provided us with the setting, the skills, or the technology for this vital health planning over lifetimes. It’s nowhere. Read More

What Happens Next? Planning Care

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

People: What’s wrong with me? Should I tell the doctor? What does she want me to do?  Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? What should I worry about? What should I do if it happens (again)?

Clinician: What’s on his mind? What’s wrong with him? What should I do next?  Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?

Questions, questions, questions. So many bumps in the road and detours  in the health journey. Few maps, spotty GPS at best.

Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.

We are each an experiment of one.

These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.

Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.

People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.

Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.

Everyone: Expect your electronic health records to be able to record and track care planning.

Harmonic Convergence

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

Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement.


Quadruple Aim: Improving the patient experience of care, improving the health of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.


Health information includes the data in our health records (paper or electronic),  patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter.  Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act  (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations. Read More

AACH: Communication and Relationships

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

I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief. The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: We have a lot to learn. Especially about patient centeredness. Most exciting for me was a presentation by Sharon Schindler Rising, a nurse midwife, talking about Centering Groups – facilitated groups of 6-10 young moms/couples preparing for the impending birth of a child. A wonderful example of people-centered design with participants directing much of the flow of the monthly small groups. Professionals and services came to them. Groups often kept meeting on their own after the children reach one year old, sometimes for 8-10 years. New groups have been starting for decades. Evidence over that time showed significant increase in proportion of pregnancies going to full term and decrease in the proportion of low birth weight babies. One sad piece of the presentation was the description of the barrier caused by the advent of the electronic health record. One participant-generated practice had been for moms and dads to enter their own health data into the paper record: instant empowerment!  Not so with electronic record. People could no longer enter their own data into the health record. Shadow records had to be created. Lord, I was crushed when I heard this. I participated in several subsequent discussions about the infrastructure and skill set that would be needed to spread the Centering Group model to other settings. Instant learning!! Read More

Transitions – What you don’t know can hurt you

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

Still exploring communication across transitions.  This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays)  there  is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read.  Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system.  The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.

Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged.  The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well.  Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely  The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Read More

Scared?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader | 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

Not collected? Not studied.

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Researcher | 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

Secretary General of Your Health Team

By | Advocate, Consumer, ePatient, Family man, Leader | 3 Comments

I want to be a good leader of my healthcare team. How would I know?  Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist.  She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs.  My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered.  Is that OK with me?

My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team.  If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.

Who is my team?  Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself.  I’ve selected this team (except the insurance and pharmacy benefit companies).  One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators.  It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?

Better Clinician Experience, better #PtExp erience

By | Advocate, Clinician, ePatient | No Comments

I attended a meeting last week of Mass Health (Massachusetts Medicaid)’s Payment and Care Delivery Quality Improvement Work Group (a mouthful).  The main topic: patient experience. Measuring #ptexp is critical and challenging. There’s no best way to measure, and it’s quite expensive. Who loves to fill out surveys? I do when I’m seriously delighted or completely pissed off.  Mostly I couldn’t be bothered.  It’s time-consuming, especially when I’ve been to my many specialists in a short period and get surveys from each. The questions are usually difficult to answer. They ask specific questions about similar events over time. Do they want to know about the last visit, or all the visits in the past three months? The questions often don’t ask about what’s important to me. I fill out the survey and I wonder, what will they do with this?  Will anything improve?  Will the doctor or nurse have more time with me?  Will they look at me or the computer screen?  Can I bill them for my time? My doctors know that I write about your experience (the experience of the people at the center of care).  They tell me about their frustrations with their jobs. They talk most often about administrative tasks – the electronic health record and having so little time with each individual. Read More

Driving our health journey – writing the story

By | Advocate, Caregiver, Consumer, ePatient, Informaticist | 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.