Push, push

My wife waits to tell me about something she wants us to do or buy, because I’ll just do it or buy it. Bam, bam. I’m a doer.  Push, push.  About 20 years ago I realized that the biggest stress for my teams was me. Push, push. My line is, let’s develop our work plan with the idea that we will do 75% of what we set out to do.  If we do 100%, we didn’t set our sights high enough.  The nice thing about push, push, is that if the team or I am stressed we can pull back on the throttle and take it a little easier – no one will know, but us. If I’m unhappy with something, it’s push, push – do something to make it better.  I don’t wait well and let it play out – enjoy the moment, be patient.  This week my neurologist reviewed my progress  over the past six years (of my progressive MS) and told me I was doing great in almost everything. Everything except walking.  That’s getting worse. And he said, I’m sorry to say, but it’s not going to get better. This is where push, push doesn’t work so well.  I think I can be patient and let it play out.

Notifying me when accessing my health data

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.

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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Making a Difference?

On the phone with my friend and fellow-blogger, Cristin Lind, wondering if we are making a difference. In our many years of advocacy for person-centered health, has the dialed moved? We are change agents. How do we know if we’ve accomplished anything? How do we recognize change in an ocean?  Can one person reducing climate change? How do we know if health is more person-centered?
I closed on a job once by saying I wanted my family to get fabulous care and service where I hoped to work; I wanted the place to be an inch better when I leave as when I start; and I wanted to have fun. These barometers work for me! The first is the vision. I want to be able to recommend where I work. I need to listen to consumers of our services to be sure they would recommend, too. The second is realism. I am one person. It’s not about me. My legacy will likely be small, but present.  If it’s big, fabulous. The last – having fun – is fuel for the engine.  I was in a meeting last week with several people about a project.  One of my staff was with me.  She had done her homework, was prepared, was brave, inciteful, and well received.  That was fun, that was fuel!
How do you know if you’re making a difference? What’s your fuel?

Driving our health journey – writing the story

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.