Patient Empowerment

 

e-patient stories, e-pts resources, key people, medical records, net-friendly docs, positive patterns, precision medicine, pt/doc co-care

Participatory Personalized Medicine in Action: Pharmacogenomics in Primary Care

This is a post by SPM Board Member John Hoben – Business Development Director at Bio-Optronics. Hoben’s passion is reconfiguring medical industrial complex assets and transactions from sickness response to true preventive delivery. This entails focusing on realizing improved health status for populations through unique, individualized approaches.   A funny thing happened on my recent annual […]

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e-pts resources, general, reforming hc

Curiosity Got These Cats Their Health Data – from GetMyHealthData

Our friends over at GetMyHealthData have put up a terrific post breaking down exactly how/why all people can access their health data. Get YOUR data – it’s yours! Here’s the whole GIF-rich party. Cats have nine lives to figure out how to get their health data, but you don’t have that kind of time.  Here are […]

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general, reforming hc, trends & principles

Pharma TV ads: Film at 11

SPM members Randi Oster of Help Me Health and Casey Quinlan of Mighty Casey Media made up two thirds of a three woman panel, “Patient Leaders Want To Kill Pharma TV Ads, Right Now,” at the 2016 ePharma Summit in New York last week (February 29 through March 2). This was the first time a group of […]

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policy issues, reforming hc, research issues, trends & principles

The Precision Medicine Initiative, Patients’ Health Data Rights and You

The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely sharing data about them – including genomic data – all in an effort to crack the code […]

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reforming hc, trends & principles, Why PM

We’re all in this together

A guest post from member Jeffrey Halbstein-Harris – this is a small slice of a longer piece he used as the basis for a speaking engagement. This is a call to consumers: my brothers and sisters who rely on healthcare and its infrastructure’s support throughout their life. I was leaving a meeting of healthcare policy experts […]

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e-pts resources, Patient Conference Participation, pts as teachers, reforming hc, trends & principles

Conference Organizers to Affected Patients: “Go Fund Yourself”!

SPM member MaryAnne Sterling is Co-founder of tech startup Connected Health Resources – she’s a healthcare transformer and person-centered care activist whose motto is: no family caregiver left behind. A recent experience, what she calls her “go fund yourself” moment, is captured in this guest post. During the Holidays, I carry on a time-honored tradition in my family: […]

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e-patient stories, e-pts resources, hc's problem list, key people, pts as teachers, social media

Guest post by Duncan Cross: I Sent This Letter To A Doctor Who Pissed Me Off

Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective partnerships with their medical professionals. This is exemplary – except for the physician’s rejection […]

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e-pts resources, general, medical records, policy issues, pt/doc co-care, reforming hc, trends & principles

#NoMUwithoutME: Primary School Edition

        Created using Bitstrips. Text engine: Up Goer Five, “Can you explain a hard idea using only the ten hundred most used words? It’s not very easy.” Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally, electronic versions of your records that you can look […]

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general, policy issues

Accountable Care: Transparency of Fees Is Mandatory

image of HIPAA form

Participatory medicine and healthcare system transparency warrior Cyndy Nayer put this up on her blog this week, and we’re re-posting it here because it’s a message that’s got to spread. A personal account of a transaction that went very badly, and rules of Health Reform were not followed In my surveys and seminars, physicians tell me […]

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policy issues, positive patterns, pt/doc co-care, trends & principles, Why PM

Mythbusting, “demanding patient” edition

We’d bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a “demanding patient.” The perception of demanding patients is that they’re behaving like spoiled divas at a medi-spa, with their demands driving up incidence of unnecessary […]

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