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Blue Button

Patient Reported Outcome Measures (PROM)

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

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?

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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.

 

Kissing the Boo Boo

By | Advocate, Caregiver, Consumer, Informaticist | 3 Comments
Health care is a tower of Babel. It’s the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don’t understand the language or culture of the people they support.  Caregivers often don’t really understand the person who they care for even if they love them. Who really understands another’s pain? People in one profession often don’t understand other professions. Few professionals or people at the center of care understand technology, policy, or insurance speak.

Here’s a stark example of the divide between the health industry (professionals, consultants, and information technology) and people at the center of care (patients and caregivers): For several years I have talked with anyone I can about a basic piece of information needed when a person has an unexpected health emergency in an unexpected place (an emergency room visit). What works for me when I’m in pain and what doesn’t?  What works for me when I’m scared and what doesn’t? Every caregiver I’ve discussed this with says, Oh yeah. Absolutely. Almost no professional, consultant, or technology person has even understood the question. It’s like I’m speaking Klingon. As a parent you know when kissing the boo boo works and when it doesn’t. When they’re scared some want to be left alone, others want you to hold their hand, others respond to specific music. Some people react badly to a particular medication, some react well to very small doses.
I’m trying to understand this divide. Aren’t people in the health industry also people at the center of care? Why doesn’t the Continuity of Care Record (CCR) and Blue Button Plus include this basic information? (The CCR document is used to allow timely and focused transmission of information to other health professionals involved in the patient’s care – medications, allergies, previous surgeries, diagnostic history). It would be a challenge to figure out how to do this, but isn’t it worth it? How can we bridge this gap?

Good Government – Office of the National Coordinator

By | Consumer, Informaticist, Leader | No Comments
I frequently write here about access to health information – necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team – heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs to access and share health information from all sources to coordinate your care. Much of health information sits in electronic tools: electronic medical records (EMR), personal health records (PHR), on the web, in smart phone applications (apps), and medical devices. We can share this information in emails and in the EMR, PHR and apps. Unfortunately, the tools often don’t link. They exist in different languages, requiring expensive translators (interfaces). In industry jargon, they lack interoperability. Often tools within one provider – a hospital, health care system, clinic needs these interfaces to work together. The problem is compounded when you see many clinicians in different systems, as I do. Multiple towers of Babel.  Read More