Danny van Leeuwen |

CMS: Use Patient Experts in Measure Development, but Don’t Pay Them?

By Danny van Leeuwen | November 11, 2018

CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach,...

Putting Patients at the Center of Pain Management Decisions

By Danny van Leeuwen | October 7, 2018

Clinical decision support researchers, developers, and implementers this is for you. Clinical decision support (CDS) technology can maximize trust and engagement during decision-making if used to its full potential. Or NOT. Consider the patient and family perspective...

Patient Ownership of Data?

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...

Give Me My DaM Data::The Revolution

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...

Cinderblocks 2018

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,...

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

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...

Introducing the Patient-Centered Clinical Decision Support-Learning Network

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...

Health Partner or Care Partner?

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...

Lived Experience + Expertise = Value

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...

Precision Prism

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...