Patient Ownership of Data?

Patient Ownership of Data?

Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you. What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do...
Give Me My DaM Data::The Revolution

Give Me My DaM Data::The Revolution

SPM advocates vociferously for patient ownership of their own data. Success would be revolutionary. But revolutions do not suddenly appear. They result from persistent long-term effort, strategy, and tactics. Key milestones often only appear in hindsight. The...
Cinderblocks 2018

Cinderblocks 2018

Thanks to support from SPM Travel Fund I attended Regina Holliday’s Cinderblocks Conference in Grantsville, MD. Still pound-for-pound the best conference going. Several days of local and national presentations about health, public health, and advocacy.  Small,...
Paying for value. I’m overwhelmed. Please read this.

Paying for value. I’m overwhelmed. Please read this.

As you may know from previous posts, I sit as a patient/caregiver stakeholder on a Center for Medicare and Medicaid Services (CMS) technical expert panel (TEP) about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS...
Health Partner or Care Partner?

Health Partner or Care Partner?

Two stories for you: More than 20 years ago my oldest son was training to do development aid work in the bush of Zimbabwe. As part of his team training, he invited me to come give a talk about health with his team. I was a nurse and a paramedic at the time. I did the...
Lived Experience + Expertise = Value

Lived Experience + Expertise = Value

Recently I connected a patient expert in insurance and provider billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog. I linked a parent...

Precision Prism

I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support...

Service Agreements Among Friends and Colleagues

I’m an old hippie [left]. I’ve lived in many houses and on a farm (commune?) with other people. Regularly we heard, “I agreed to what? No I didn’t.” “Since when is that a rule?” I, and then my wife and I, developed skill in...

Person-Centered #CarePlanning – What data?

Last month, in Communicate What? #CarePlanning, I declared the #CarePlanning hashtag, and told from personal experience the importance of communication in enabling participatory care. I ended with this – my perspective as the person who has the problem and the...

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