By Danny van Leeuwen | July 22, 2018
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... 
By Danny van Leeuwen | June 10, 2018
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... 
By Danny van Leeuwen | May 27, 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,... 
By Danny van Leeuwen | May 6, 2018
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... 
By Danny van Leeuwen | March 28, 2018
Introduction SPM member, Danny van Leeuwen, Health Hats, introduces a new blog sponsored by the Patient-Centered Clinical Decision Support-Learning Network: Patient Expertise: Sharing and informing choices to connect research and clinical experience. Patient expertise... 
By Danny van Leeuwen | August 28, 2017
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... 
By Danny van Leeuwen | July 22, 2017
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... By Danny van Leeuwen | April 29, 2017
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... By Danny van Leeuwen | March 23, 2017
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... By Danny van Leeuwen | January 4, 2017
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...
What Healthcare Can Learn from Mr. RogersAugust 7, 2018
Biomedical Knowledge Must Be Mobilized to Save Lives, Not Privatized in the “Last Mile”August 5, 2018
Announcing SPM’s new Doc Tom Awards. Nominations are open!August 3, 2018
Study: Engaging patients in co-design works. Join us at our conference!July 26, 2018
Patient Ownership of Data?July 22, 2018
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