Amy Gleason is Morgan Gleason’s mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.
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.
I play 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 these 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
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
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
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
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?
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?