NPSF’s magnificent Universal Patient Compact

March 23, 2010 · Filed Under Why PM, general, policy issues, pt/doc co-care, trends & principles · 5 Comments

One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering, participatory things for years – and who’ve already been producing valuable results for years. Example: the patient safety movement.

On Paul Levy’s blog I learned about Linda Kenney, founder of MITSS; I met her and wrote about her here. Through her and others I met folks from the National Patient Safety Foundation, and especially its Lucien Leape Institute, which published a major report this month with a solid systemic look at cultural challenges in paternalistic medicine. Even got to be in a small group workshop with Lucien himself last fall. (Didn’t know who he was, but I thought “This guy knows his stuff!” Funny.)

Sometime this winter I got my hands on this magnificent NPSF document. Any of it sound familiar?
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Tags: Active Member, Advocate, Compassion, Decisions, Health Changes, Healthcare Partner, Healthcare Team, Highest Quality, Medical Information, Medicine, Meeting People, National Patient Safety, National Patient Safety Foundation, Nspf, Partnership, Patient Safety Foundation, Paul Levy, Pleasures, Pledge, Respect Honesty, Respect Your Right, Safety Standards, Treatment Options, Truth

Tell the FDA the whole story, please

November 8, 2009 · Filed Under policy issues · 48 Comments

I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…)

So when I saw Jonathan Richman’s tweet the other night, I couldn’t resist it:

Anyone ever seen data on the overall accuracy of medical information found online? Need help for some final stats for #fdasm

Short answer:

No.

Long answer:

The Pew Research Center’s Internet & American Life Project has been reporting on the social impact of the internet since 2000, when “information quality” on health websites was a big part of the conversation. It was the era of wagging fingers, scolding patients for straying too far outside their boundaries, and Pew Internet data was ammunition.

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Meaningful Use: The Elephant IS In The Room

May 18, 2009 · Filed Under general, medical records, policy issues, reforming hc, trends & principles · 18 Comments

Comparative Effectiveness: a comparison of the impact of different options that are available for treating a given medical condition for a particular set of patients. Such studies may compare similar treatments, such as competing drugs, or they may analyze very different approaches, such as surgery and drug therapy. The analysis may focus only on the relative medical benefits and risks of each option, or it may go on to weigh both the costs and the benefits of those options.

I am afraid that by focusing so much on HITECH and on the definition of Meaningful Use and Certification on this blog we have been missing on the most important part of the “ARRA” stimulus package , the initial $1.1 bn. funding of Comparative Effectiveness Research (CER) to be spent by Sep. 2010. Specifically some of the $400 millions to be used at the discretion of the DHHS Secretary that must be allocated to encourage the development and use of clinical registries, clinical data networks, and other forms of electronic health data that can be used to generate or obtain outcomes data. It certainly looks like the national implementation of EHRs may become fully intertwined with CER.

The minimum definition of “Meaningful Use” as defined in ARRA includes e-prescribing, electronic exchange of medical information and interoperability. These are also the necessary elements to start implementing a national CER strategy. There is just too much at stake this time to think it won’t happen.

e-Patients should become informed about the potential impact of CER for future care. Please read the summary of the “Listening Session of the Federal Coordinating Council for Comparative Effectiveness Research” from April 14, 2009 to get a better understanding why we, the patients & patient groups, must get directly involved in helping to develop the CER private/public infrastructure & activities.

Tags: Adverse Effects, April 14, Arra, Array, Baby Boom Generation, Benef, Benefi, Budget Director, Comparative Effectiveness, Congressional Budget, Congressional Budget Office, Continuous Involvement, Controlled Trial, Coordinating Care, Current Health, Current Position, Data Networks, David Kibbe, Determinant, Dhhs, E Prescribing, Effectiveness Research, EHR, Ehrs, Electronic Exchange, Electronic Health Data, Elephant, Federal Coordinating Council, Federal Health Insurance, Fiscal Balance, Forceful Advocate, Future Care, Hard Evidence, Health Care Costs, Health Care Spending, Health Insurance, Health Insurance Programs, Health Policy, Health System, Hitech, Incoming Head, Informatio, Medical Benefits, Medical Care, Medical Condition, Medical Evidence, Medical Information, medical records, Medical Treatments, Meeting That Took Place, Minimum Elements, National Implementation, Necessary Elements, npr, Obama, Omb, patient groups, Performance Metrics, Peter Orszag, Private Payers, Public Infrastructure, Reinvestment Act, Relative Effectiveness, Researc, Rigorous Assessments, Rising Health Care, Rising Health Care Costs, Secretary Of Hhs, Stimulus Package, Treatment Options, Yeste