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interoperability Archives - Danny van Leeuwen Health Hats

Standard Health Record

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

win_20161030_08_52_02_proI’m on vacation this week. A Blues Cruise. Heard two bands with bari saxes already – Los Lobos and Selwin Birchwood. Today, I’ll try to join the Pro-Amateur JAM.

So just a quick post:
Last week I was invited to the @MITRE Corporation by @HarrySleeper and met teams working on:

  • Standard Health Record, an open source single health record, if it happens to the person, it’s in the SHR. Secure, informed-consent access to our health data across multiple platforms with advanced security and privacy protocols. Accessibility for us and authorized family , care partners, and healthcare providers to our health-record 24/7, anywhere in the world. Empower people with an enduring voice by allowing us to add, verify, and easily share our data with trusted third parties
  • Intervention Engine, assigns risk rating and prioritizes patients for clinician team members in clinics and offices to huddle and review patient status and proposed interventions
  • SyntheticMass, a test database of Massachusetts residents health records simulate population health. Expecting to have all 7 million loaded in 2021
  • Bonnie, a tool for pretesting clinical quality measures
  • Social Determinants of Health, a great graphic for a holistic picture of health

Thanks to @JuhanSonin for the intro. Amazing work going on. Need to spread the word. Till next week.

Life literacy – If you can’t explain it to a six year old…

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | 2 Comments

I plstudentsay baritone saxophone in community Latin and blues funk bands.  Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient Centered Outcomes Research Institute).  I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study).  I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at thesparents-teachers-meeting-vinod-school_b2840c36-5634-11e6-bc43-9f8bec77897ce sessions. I also take part in calls for OpenID HEART Working Group that 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. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago. Read More

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

Fractured Communication in Crises

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

This week two of my readers described experiences of fractured communication with their clinicians.  One reader, a person in acute treatment for overwhelming anxiety, found himself watching and feeling the effects of dueling clinicians with widely differing diagnoses, medication regimens, and styles of communication. A collaborative, listening, empathetic physician versus a paternalistic, blameful, arrogant physician. Both physicians practiced in the same organization but in adjacent levels of care (one inpatient and the other outpatient). They didn’t coordinate care – they didn’t even speak to each other. The person with acute anxiety had to muster energy to advocate for himself and seek help from his partner. To little effect.  The other reader experienced a sickle-cell crisis in a hospital without a sickle-cell specialist.  She couldn’t get pain medication known to work for her.  She was classified as a drug seeker.  The treating physician wouldn’t communicate with the specialist who had treated this reader successfully many times and managed her long-term care.

So many levels of outrage here. How is it that institutions, practices, and people working in these two programs don’t know about disrespect, poor communication skills and lack of coordination within? Does nobody raise a red flag?  Where was the medical record? Where were the leaders? 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

Notifying me when accessing my health data

By | Advocate, ePatient, Informaticist, Leader | 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?

Nothing about me, Without me.

By | Advocate, Caregiver, Consumer, ePatient, Informaticist, Leader | No Comments
More about the work of the group OpenID HEART (Health Relationship Trust) that I blogged about a couple of weeks ago. Health Relationship Trust: interesting name – people at the center trusting the relationships in their health journey. My blog tag line is: Discovering the magic levers that impact best healthMy personal mission is: Increase the sense of balance people, caregivers, and clinicians feel as they work together towards best health.   Best health is tough enough. Relationships and trust are magic levers of best health and live at the core of people’s balance.
The electronic interconnectedness of people, their caregivers and professionals in their agencies allows our personal reach, our health neighborhoods to expand. The flow of information increases hugely. It’s wonderful: We can keep track of loved ones from a distance. We can find neighborhoods of people like us all over the world. We can communicate with our health team where ever they live.
But this information exchange comes at a price. The big business of information is the price. We have gotten away from nothing about me without me. We have most control of direct person-to-person communication (talk, snail mail, email).  Trust still matters. Will the person listening keep it to themselves?  Do I care? As more data about me is collected, who owns that data?  My control decreases dramatically. Can I share where I want? Can I correct errors? Can I retrieve data?  As automated systems for data exchange are created, can I influence the content that is exchanged?  Not just whether or when, but also what content matters to me?

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.

 

Health-Hats: It’s Been a Year

By | Advocate, Caregiver, Family man | One Comment
I started this blog a year ago, more than 70 posts – now settling into one a week. Thanks especially to Jane Saransohn-Kahn who set me on this journey, Eric Pinaud and Jodi Buckingham who provide technical support, and Kathy Pooler, who inspires me and encourages me to write regularly. My almost 100 readers provide me with feedback and encouragement. They range from caregivers, ePatients, and advocates to administrators, policy wonks, and techies. All wear more than one hat. Don’t we all? I’ve been a student of personal, team, and organizational health for more than 40 years. It’s a gas to reflect and comment on best health for the past year. I love to write. It’s only sometimes a challenge to find something to say. It’s often a challenge to keep it in the 250-450 words range and its always a challenge to remember the varied community I live in and write for. I thank you all for being with me for this study of magic levers of best health – so simple, yet so hard. On top of mind for the next year – caregivers, self-determination, data exchange, measuring success, life balance, and appreciating what I have. Wheeeee. Off we go. See you next week!