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... By Danny van Leeuwen | December 9, 2016
I want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference. My wife and I built a house together – the whole house, everything except...
SPM on TV in Hartford after last week’s “Better Health” conferenceJune 13, 2018
Give Me My DaM Data::The RevolutionJune 10, 2018
Skeptics ask why patients would even WANT their medical images. We asked on Facebook.June 5, 2018
Cinderblocks 2018May 27, 2018
You Don’t Have to be Alone to be LonelyMay 23, 2018
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