by Danny van Leeuwen | Jul 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 | Apr 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 | Mar 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 | Jan 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 | Dec 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...
by Danny van Leeuwen | Nov 11, 2016
On September 26, 2016, President Obama recognized Health IT Week by saying: We have worked to clarify an individual’s legal right to access their health information and transmit it where they choose—whether it’s to a family member or to their smartphone. These efforts...
by Danny van Leeuwen | Jun 24, 2016
SPM member Danny van Leeuwen is @HealthHats on Twitter. Last week I attended the American Academy of Communication in Healthcare (AACH) Conference in New Haven – 2016 ENRICH Healthcare Communication Course and Research Forum at Yale, entitled, Diverse Voices, Common...
by Danny van Leeuwen | Oct 12, 2013
The relationship between health team members, especially people and their clinicians and caregivers, frequently arises as a topic of this blog. Let me share with you one of the values of Advocates. Â I work for Advocates as VP of Quality. Â We express our values...
by Danny van Leeuwen | Jul 22, 2013
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by Danny van Leeuwen | Apr 11, 2013
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between...
by Danny van Leeuwen | Feb 26, 2013
The overlap between the clinical aspects of our health journey and behavior of health team members occurs most often in medication management. Effective medication management depends on empowered, informed patients and caregivers prepared for clinician visits, and...
by Danny van Leeuwen | Feb 19, 2013
There’s been a great thread on Dr. Wes’ blog and the SPM listserv about patients obtaining and reading their own EKG’s.  As you can imagine — lots of pros and cons. A significant difference noted between the right to have the information...
by Danny van Leeuwen | Feb 9, 2013
The Patient Centered Outcomes Research Initiative (PCORI) was established in 2010 by the Affordable Care Act with a mission to help people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by Danny van Leeuwen | Feb 7, 2013
As you see in Sarah Krug’s letter above, HIMSS and S4PM entered into a collaboration. I sit (with Ileana Balcu) on HIMSS’ eConnecting with Consumers Committee where we advocated for this partnership. Everyone on the Committee could be a member of S4PM, as...
by Danny van Leeuwen | Jan 16, 2013
This is the third of 3 recommendations a group of Boston-based PCORI Ambassadors made to the PCORI Board in November. The first was Expanding the Scope of Research Questions Funded, the second, Micro-contracts. Researchers typically struggle to include...
by Danny van Leeuwen | Jan 4, 2013
Susan Woods responded to my previous post, PCORI and Just-In Time Decisions with the research funding system doesn’t really work for anyone. It is in concrete, Agreed.  Micro Contracts could be a small intervention that could help move the dial. (As a reminder,...
by Danny van Leeuwen | Nov 19, 2012
Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats. What do we e-Patients need in our electronic health records? Help by sharing in the...
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