The Health Data Consortium, the folks who bring Health Datapalooza to life in DC every year, have increased the input of the Consumer Circle ahead of this year’s event, which is on the calendar for May 29 thru June 3 at the Marriott Wardman Park in Washington DC.
As part of that commitment to increasing the consumer/patient voice in the ongoing health data policy discussion, HDC is offering a webinar on Wednesday, January 21, 1pm-2pm Eastern Time, titled Patient Generated Health Data: An Overview.
The webinar panelists are:
- Mandi Bishop, Health Plan Analytics Innovation Practice Lead, Dell (health data super-geek who’s been working on interop her entire career)
- Greg Meyer, Principal Architect, Cerner Corporation (data system architect with his heart, and his thinking, focused on better data access for patients)
- Dr. Danny Sands, Chief Medical Officer, Conversa Health (one of the founders of SPM, and a constant voice for “gimme my damn data”)
- Scott Strange, Diabetes Advocate (SPM member and MedX ePatient Scholar who’s a widely read ‘betes blogger)
Here’s the overview of what’s on tap:
The information patients and their family caregivers provide about their preferences, values, and abilities – in addition to data generated from wearable or monitoring devices – complements clinical information generated by care teams to provide a comprehensive, person-centered view of an individual’s health. Use of both clinical and patient generated data is a more effective approach for engaging patients and their caregivers, ensuring that care results in better outcomes, and decreasing costs associated with unnecessary readmissions and difficulties with adherence. Learn more about Patient Generated Health Data, when and how to collect it, and how to share it at this webinar organized by the Health Data Consortium’s Consumers’ Circle.
Register to attend the webinar by clicking this link – if you can’t join live, registering for it will give you access to the recording post-event.
Our movement seems to be entering a turning point, and today Paul Levy’s blog had a great example.
The change is embodied by the 2015 theme of our e-patient conference buddies at Medicine X: “This is the year of doing.” In my view this means two things: bringing it from concepts into specific actions everyone should do, and bringing it to the grass roots – the people you meet in the supermarket.
(Note: the MedX logo shown here is not related to Paul’s post – they’re two separate examples of this shift, neither of which is formally connected to SPM – but maybe we should be! The point of this post is that our great big “school of fish” seems to be making a big right turn.)
Paul’s post today is a great example of how an empowered / thinking e-patient thinks and acts, as opposed to what an unthinking patient would do. In Don’t be a nail just because your doctor’s a hammer, he shares a friend’s story. Quick excerpt:
- Toddler was “failing to thrive.”
E-patients know that social media can be a potent tool for spreading the movement, spreading the message, and connecting with others. Some of us are better at it than others; if you’re looking for someone to follow who does it well, try SPM member and Medicine-X ePatient Scholar Marie Ennis-O’Connor: bio, Twitter @JBBC, website Journeying Beyond Breast Cancer, and column Beyond The Buzz: HealthCare Social Media at Health Works Collective. (See what happens when a PR professional” meets “cancer patient”?)
Marie came to mind just now for this great poster (“infographic”) created by Tim France @FranceTim of @iniscom and Tom Fowler @GlobalHealthTom about using Twitter at events. To visit her original post on the Healthcare Social Media site, click the graphic.
Over 90% of the world’s population has some type of mobile phone, according to reports from the ITU (International Telecommunications Union and PEW research. mHealth will continue to be a major factor in technology and health in 2015, with new apps that connect patients to physicians for real-time monitoring of heart rate, pulse, blood pressure and blood sugar, weight, body temperature, asthma, and more. Most of these apps either cost under $5.00 or are free. There will be expanded use of SMS (Short Message Systems) to send health information tips and reminders to patients throughout the world.
By far, among the most compelling innovations in 2015 will be the increased use of wearable technology — devices and clothing embedded with sensors that can track an individual’s activity, sleep, heart rate, pulse, blood pressure, weight, and more. From headsets that measure brainwaves to t-shirts, hats, smart shoes and socks, and special glasses, personal health monitoring has come of age. In 2014, the most popular wearables were the fitness trackers, including the popular FitBit.
In a report released today (December 16, 2014), Consumer Reports shares insights from a survey of 1,200 people who were recently hospitalized. SPM is not surprised by the findings, which include the fact that patients who said they received respectful treatment by hospital clinicians reported fewer medical errors and better experiences in their hospital stays.
This could be a landmark that helps to shift the paradigm on hospital safety and medical errors, given that Consumer Reports is read by a much more diverse audience than is JAMA or NEJM or BMJ. Getting information on how to manage a hospital stay in front of patients and families *before* they get hospital treatment – information that isn’t just a procedure brochure from their surgeon, as helpful as that can be about the reason for the hospital stay – is critical to increasing patient safety.
One message that comes through loud and clear: engagement may be the buzzword, but accountability is the watchword, for both clinical teams and patients. We all have to participate. Which we can only do if we’re fully informed.
Reading through the report online, which we encourage everyone to do, serves up these key points:
A physician friend once shared his belief that the main product of a physician’s productivity is the diagnosis. Setting aside feelings about the notion of a work product in medicine, I’ve quite liked the simplicity of his distillation. The diagnosis is the economic enabler which leads to tests, prescriptions, treatments, interventions and counseling.
So, what happens when patients can make their own diagnoses with the same, or better, accuracy?
That’s the question Innovation Hub Radio tackles in this week’s episode:
Question: What do insulin pumps, at-home pregnancy tests, and space medicine have in common?Answer: They can be administered without a doctor, and they might be the future of medicine.
—Innovation Hub Radio, WGBH
The recent dialogue about autonomy on this blog suggests moving more tools into the hands of patients is something many SPM members see as desirable. Further, one of SPM’s founders and past president, Alan Green, is helping Scanadu build what’s being touted as the medical tricorder. So certainly, these kinds of hard questions are in our DNA.
To that end, what happens to the patient-physician dynamic when the patient, not the physician, makes the diagnosis? Are there limits, technology aside, to what should be diagnosed at home? What responsibilities to patients have to themselves and their greater community when a diagnosis is made at home? And, to my friend’s comment about work product, what role do physicians play for patients who self diagnose accurately in the home?
This post by long-time SPM member Michael Millenson first appeared on the EngagingPatients.org blog. We’re re-posting it here to both put it on the membership’s radar, and to invite comments on Michael’s POV that “As much as we can argue that patient engagement with their own healthcare decisions is progress, asking patients to keep doctors honest about the most basic medical practices is less a form of patient-centered medicine than a tacit failure of physician professionalism – and to an even greater degree a failure of medical management.”
The process of engaging patients in making care safer should be seen through a Santa Claus lens. It can be naughty or nice, depending not on good intentions but on the specifics of the intervention.
Rapid advances in the technologies giving scientists the ability to analyze, understand and identify the unique characteristics in the genome of every human being are now being translated into clinical applications that are actually prolonging the life of many individuals afflicted with a variety of diseases. This was evident at the 10th anniversary of the Personalized Medicine Conference, sponsored by Harvard Medical School and Partners Healthcare recently.
The presentations focused on the great strides that have been made since the conference began a decade ago, when conference participants were talking about possibilities that genome sequencing might offer, along with the high costs associated with this technology.
It was evident this year that those possibilities have evolved into concrete clinical applications that are saving the lives of patients with complex conditions, particularly in the field of oncology. It was also apparent that the costs, which were a prohibiting factor just a few years ago, are lining up to make this technology not only feasible, but realistic.
Guest post by Hugo Campos; introductory note from Society for Participatory Medicine president Nick Dawson
Every movement evolves. And as a grassroots social justice movement, the Participatory Medicine Movement is also growing, changing and evolving. Something I’ve learned about myself is how uncomfortable I get when I’m on the edge of learning or gaining understanding. For the past few months, I’ve personally been uncomfortable with some of our terms, definitions and approaches to participatory medicine. To be clear, I don’t know what the future of the Movement is — and would suggest none of us alone has that complete vision.
SPM started in 2009 by redefining the patient’s role to emphasize autonomy. Like any project, we’ve had scope creep; talking about cooperation, ethics, and the now over-covered conversations about patient satisfaction and costs of care. This is not enough. Autonomy and emancipation are totally different issues from “satisfaction” and what things cost. Our goal ought not to be to make ourselves look like everyone else – our goal ought to be to establish what’s missing, what the problem is, and to fix it.
Healthcare providers who are tracking patient experience and patient satisfaction, take note: a new study reported yesterday in Science Daily provides evidence that we patients really like it when we can view the data you collected about us.
Even us over-50 ones, who are widely believed to be technologically not up to the task. (Fans of patient autonomy, like SPM member Hugo Campos, will like this too.)
Read the whole piece in Science Daily for more specifics, but here are a couple of hot spots worth circulating widely: