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e-patients

Oct 24 2011

#1 patient rule in #occupyhealthcare: be responsible for yourself

By e-patients, healthcare industry

Healthcare providers are waking up and realizing that they need to partner with their patients to get better outcomes for their facilities and practices, and for their patients. As Accountable Care Organizations (ACOs) get more and more press, the healthcare delivery side is the entity being held accountable. Patients must step up to the bumper on accountability, too. Two phrases have entered the medical lexicon thanks to the Patient Protection and Affordable Care Act, a/k/a “healthcare reform.” PPACA is not actually healthcare reform, it’s health payment reform, but I digress. The two phrases are “patient-engagement,” and “patient-centeredness.” Doctors are being told that they must engage with patients, and offer care centered on their patients’ needs … but that engagement and centeredness message is not being simultaneously driven toward patients. Therein lies an opportunity for #fail. Patients need to take responsibility for their health, their actions, and their care. I’m not saying that we should shut up, sit down, and do what we’re told. What we must do is ask questions, work to understand the answers, and then do what is in our own best interest, health-wise. That does not include ignoring instructions to cut down on salt or saturated fats. It most certainly does not involve living on drive-thru meals and expecting a prescription to resolve your expanding waistline or blood sugar numbers. In this month’s HealthLeaders, Joe Cantlupe talks about how doctors are making more robust suggestions to their patients, with the goal of turning medical care into a true partnership between patients and providers. Healthcare providers need to step up and work with their patients, turning healthcare into a team sport. Patients MUST step up and take responsibility for their choices as well as a full share of decision-making. That’s my story, and I’m stickin’ to it …

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Sep 21 2011

Digital Patient Bill of Rights: check!

By cancer, e-patients, healthcare industry, participatory medicine

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth One conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer. We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task. To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors): “After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights: Shared access to my data Attitude of collaboration and overall respect The patient is the largest stakeholder Transparency and authenticity across all areas Voice of the patient is a legitimate (clinical) source The right to efficient communication with providers who utilize the technology that we need” It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day. Some of my thoughts about the conversation, and the event: Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion. Each healthcare…

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Jul 27 2011

Data, Data, Who’s Got My Data?

By e-patients, EHR, health records, healthcare industry, medical records

I confess that I’d happily get a barcode tattooed on my neck if it meant I’d never have to fill out another ****ing health history form in a doctor’s office. I’m totally serious. Paper records are so … 19th century. With the advent of the current iteration of “health care reform” (which is really “health INSURANCE reform,” but that’s a blog post for another day), much has been made of the importance of Electronic Medical Record (EMR) systems in building a national Health Information Exchange (HIE). Medicine = Acronym World. The Pentagon are pikers when it comes to fogging the battlefield with impenetrable letter-fication. 21st century health care certainly must involve a lot of easily-shared data, with health history and diagnostic information traveling literally at light speed between doctor’s offices, hospitals, and clinics. Not only does it speed care, it can ensure safety: the right record, with the right patient, makes the right care clear. The thorny-issue part is this: whose data is it, anyway? Doctors certainly need to have full access to all the data on patients they’ve treated. Hospitals have to keep records on the people they’ve treated on their wards, in their clinics, and in their ORs. Payers (insurers, Medicare, Medicaid, et al) need data access to pay claims, track demographics, and create statistical and financial forecasts. And patients must have access to their own data, at minimum to vet it for errors, at best to own a full copy of their health history since birth to share with providers and care-givers. I spent 8 months trying to correct an error on the report for the breast MRI I had in 2008 as preparation for my cancer surgery. The report said “family history of breast cancer.” NO. I was Patient Zero, there was NO family history of…

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Jul 23 2010

NOTHING ABOUT ME WITHOUT ME

By e-patients, healthcare industry, healthcare price transparency

The last few weeks have been a cluster-dance of activity in the e-patient community. Actually, pretty much any week is a fast dance in the participatory medicine world, given the drive toward healthcare reform in the US. The loudest dance orchestra has tuned up around the controversy created when the American Hospital Association (AHA) posted its comments on the Phase 2 Meaningful Use (MU2) rules, which are part of the Patient Protection and Affordable Care Act (PPACA), a/k/a healthcare reform or Obamacare, depending on what your preferred nomenclature is. The bottom line: even though the Centers for Medicare and Medicaid Services (CMS) has made re-admissions to the hospital within 30 days after discharge a giant “we won’t pay you for that” red flag, the AHA stood up on its hind legs and said, regarding MU2, that they did not want to make records available to patients for 30 days post-discharge. Which seems to mean that the AHA is either totally OK with not getting paid for a re-admission within those 30 days, or they’re trying to use a giant hammer to kill the adoption of electronic medical records technology. A third explanation – and one that I think is actually what’s happening here – is that the last couple of years of massive IT deployment in healthcare has been really hard. And the policy wonks who wrote the comment for the AHA have little or no dealings with actual patients. Because anyone with a brain who works in healthcare knows that not empowering patients to manage their care is the best path to both bad outcomes and bankruptcy. If you’d like to read all about the issue, you should start with David Harlow’s Healthblawg e-Patient Dave Healthcare activist artist Regina Holliday (the Rosa Parks of patients’ rights)

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Nov 30 2009

Health Care Storytelling

By e-patients, healthcare industry, storytelling

In all the sturm und drang over the US health care system in the last couple of years – and the last many decades – one voice seems to be largely missing in the discussion. We’ve heard from health care providers – hospitals, doctors, et al. We’ve heard from insurance companies. We’ve certainly heard from politicians. We have not, however, really been hearing from patients, unless some disease sufferer with a story to tell to support the POV of a health care provider, an insurer, or a political position gets trotted to the microphone to tell his or her story. As social media rises as the brave new communication platform for any and all global-village ideas and events, health care is starting, sloooooowly, to dip its toe into social networking as a tool to get their message out. What we have not seen, though, is a lot of listening, other than the usual suspects listening to (and yammering at) each other. There are a number of community sites that have grown up around specific conditions and issues – Fran Drescher’s Cancer Schmancer community and Lance Armstrong’s LIVESTRONG efforts around cancer spring to mind. Microsoft has launched MyHealthInfo.com, and Google’s got Google Health. Patients are out there: on Facebook, on Ning, on Twitter, and other online community sites like SparkPeople.com. However, less than 20% of doctors are currently using technology to manage their patients’ medical records – given that resistance to technology, combined with the strictures of HIPAA (which I swear must mean Health Insurance Paying All Attorneys), it’s easy to see why the health care industry seems to be MIA in the Web 2.0 world. One of the reasons cited by health care providers for not using web tools to communicate with their patients is privacy concerns. That is a…

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