research issues

 

hc's problem list, research issues

NY Times: “Do clinical trials work?”

Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab. That means to be scientific, e-patients and their physicians must be cautious about interpreting any published result: […]

Read More
hc's problem list, policy issues, research issues, shared decision making

Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition

Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based medicine. If you haven’t read that quick post with 6 minute video interview, please […]

Read More
e-pts resources, general, research issues, trends & principles

The FDA Patient Network Website – Patient-Centeredness that Walks the Walk

The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the […]

Read More
e-pts resources, patient networks, research issues

A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization

Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc) It’s “created and maintained by thyroid cancer survivors,” with a long list of physicians as partners […]

Read More
ethics, general, policy issues, positive patterns, pts as teachers, research issues, Why PM

Partnering with patients – about patient centered RESEARCH METHODS

This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine, as the professions begin to understand the value […]

Read More
e-patient stories, found on the net, news & gossip, positive patterns, reforming hc, research issues, trends & principles

Health Affairs Patient Engagement Edition – with videos and commentary

The Health Affairs February 2013 issue is titled “New Era of Patient Engagement” and the content matches the title. Nick Dawson describes the day in his blog post Health Affairs is the new shirtless dancing guy Here’s a short extract from the blog post. It’s worth reading, it has other interesting tidbits. The briefing was […]

Read More
research issues

PCORI Board Meeting, San Francisco, February 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, evidence-based information that comes from research guided by patients, caregivers and the broader health care community and a vision […]

Read More
research issues

Research – Route funding through consumer organizations

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 patients/consumers in their research design, implementation, and dissemination. The power dynamic favors the researcher, not the patient. Government and industry […]

Read More
research issues, shared decision making

Finally! An initiative from *within* science to reproduce studies. (And not everyone likes it.)

Correction Monday morning: the project is called the Reproducibility Initiative, not Project. Also, note that we got a comment from co-founder Elizabeth Iorns – discuss! I happened to catch friend Ivan Oransky of RetractionWatch on NPR’s Science Friday last week, and caught an item that excites me because it could strengthen one of the pillars of […]

Read More
research issues

PCORI and Micro-Contracts

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, the Boston contingent of PCORI ambassadors, including S4PM member, Ken Farbstein, made three recommendations to the PCORI […]

Read More