SPM member Richard Anderson @RiAnder has a lot of experience helping to found and develop another organization’s local chapters around the world. Because of a nightmare experience with the U.S. healthcare system, he has decided to work to change that system, and as part of that work, to start a local chapter of SPM in the San Francisco Bay Area. This will be SPM’s first such chapter. He invites you to join and to help out, including perhaps sponsoring:
I’m delighted to announce that I’m in the process of starting the first local chapter of the Society for Participatory Medicine. This is all happening in the San Francisco Bay Area.
If you reside in the SF Bay Area, I invite you to join the group: http://www.meetup.com/Society-for-Participatory-Medicine-San-Francisco-Bay-Area/. If you know of others in the San Francisco Bay Area who you think might be interested in joining, please let them know about the group as well.
Topics/issues to be addressed at chapter meetings will include
An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada.
Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference.
The main conference themes are:
- Patients Talking
- The Profession Listening
- Services Unleashing the Imagination
Patients are encouraged to submit papers that provide their own stories and insights. Concern is not the formal style, but descriptions of how patients can communicate with clinicians. Most importantly, we are interested in your ideas.
Conference Website: http://www.uvic.ca/hsd/itch/index.php
Instructions for Patient Perspective Papers
New in JoPM: “I No Longer Have to Go to See the Doctor:” How the Patient Portal is Changing Medical Practice
SPM co-founder Charlie Smith (Charles W. Smith, MD) was “Doc Tom” Ferguson’s own physician, and currently serves as co-Editor-in-Chief of our Journal of Participatory Medicine. He’s just published a brief but important editorial in the journal. It begins (emphasis added):
“Not long ago, the only options my patients had for communicating with me were to come in to the office or relay a message through the office staff. The result is a cumbersome system that most patients avoid using unless there is a major problem or crisis to address.
“But, since recently introducing the patient portal in our electronic medical record, my practice has changed substantially. My patients tell me it’s for the better. Admittedly, there is the additional daily burden of responding to lab results, refill requests, and patient questions. But each of these is also a major improvement in efficiency and effectiveness of information flow, which is fundamental for any patient who aspires to be “’participatory.’”
He goes on to describe the challenges as well as the benefits.
If you (patient or provider) are starting to use a portal, I suggest you print this editorial and share it with others:
Uri Goren is the General Manager of e-Pochonderiac a blog about healthcare and digital technology and also a digital health consultancy and agency working in Israel to support digital health in the local health and pharmaceutical industry and to promote the roll of the patient in the healthcare ecosystem. This venture has begun from a professional standpoint as a communication and digital professional working with industry and in it for the past 13 years, but also from a personal standpoint as one who accompanied his father in his battle with cancer. Uri holds a B.A in Communication and Management from the College of Management and an M.A in Philosophy and Digital Culture from the Tel Aviv University. Uri is a member of the Society for Participatory Medicine and the Israeli chapter of Health 2.0.
Uri presented a talk at TEDxHIT: Uri Goren: Patient are not an empty carriage Here’s a brief description about the talk:
Through my personal experience as a caregiver for my father during his fight with Lymphoma and also my professional experience I came to realize that patients hold the key to transforming healthcare. In this talk I try to bring this point through a metaphor taken from the history of Israel, and also emphasize the role of digital tools as a having a key role in the transformation needed.
A handy one page chart from our Past President Sarah Krug through Cancer101 summarizes the best way to become an e-patient:
Here are a few points:
You have a story to tell. Don’t be afraid to tell it.
Make sure to write down and ask questions.
Know your options so you can make informed decisions…
Guest post by SPM member Leslie Kernisan, whose words first appeared here in a September interview at Medicine X: “Leslie Kernisan (Twitter @GeriTechBlog), a geriatrician who’s deeply interested in and committed to enabling elders and caregivers through patient and family engagement.” (SPM members are invited to submit guest posts; guidelines are here.)
Leslie writes, “We’ll be talking about how we might bring more geriatrics health information to older adults & their caregivers, and other aspects of adapting the e-patient approach for an aging population. Hope you can join!”
OpenNotesOne of our MD members, Peter Elias, tipped us off on our listserv to a post on KevinMD.com from a clinician who was expressing concern about the wisdom of OpenNotes, and fully sharing information with patients in general.
Peter posted a comment, which we thought worthy of its own post, given that it speaks clearly, from the physician perspective, of the philosophy of participatory medicine and data-sharing between patients and their doctors.
The Heartbleed web security exploit was first publicized several weeks ago. In the time since then, numerous web-based services have let their users know (some more clearly than others) whether and how their data security was compromised by this OpenSSL flaw that has been open for about two years. This is one flaw, one exploit, but on a scale of 1 to 10, it has registered as an 11 on our collective consciousness. Fred Trotter notes in the MIT Technology Review that other similarly worrisome exploits do not get our attention in the same way, and that more health data leaks are likely in our future. He also cites others’ observations that many health IT vendors are not currently equipped to respond effectively to such exploits in a timely manner.
This post was originally a comment by SPM member Jeffrey Harris on our C-ME post from April 3, 2014. Jeffrey has a long history as a clinician, a health IT strategist, and as a patient. We thought his commentary deserved its own post.
I had the opportunity to moderate a PCPCC e-Health Public Meeting recently. We interviewed Dr. David Kendrick from the Oklahoma My Health Network. I believe they are a good example of the top 10% of HIE implementations for quality and value added to most stakeholders.
The architecture makes sense as the HIE brings services that eliminate administrative costs among providers, policy experts, payers and even patients.
They are using HealthVault as a PHR which, as you know, allows patients to create their own information-sharing profiles as well as connect to lab hubs, pharmacy hubs etc.
Your comment on a regulated banking model is something I would support. Here is the reason: As a healthcare executive with clinical program skills and HIT innovation patents I would be short sighted unless I add in my 47 years as a person with diabetes and associated co-morbidity.
By Mark Branning and Brad Tritle
Mark Branning is Principal at mdb Healthcare IT Solutions, Adjunct Professor at National University, a member of the HIMSS Connected Patient Committee and co-chair of the Connected Patient Community. Mr. Branning has spent 33 years in the healthcare information systems industry and is a consultant specializing in patient engagement, health information exchange (HIE), interoperability, and product positioning.
Brad Tritle is Global Product Owner for Chronic Disease Management at vitaphone health solutions, co-founder of eHealth Nexus, former CEO of eHealth Trust Arizona, former executive director of Arizona Health-e Connection, and has served as a consultant to ONC on patient engagement for health information exchange. He is a member of the HIMSS Connected Patient Committee, co-chair of the Connected Patient Community, and chair of the HIMSS Social Media Task Force.
This is a cross-post of a HIMSS blog post and it is posted here with permission.
Though the term Consumer Mediated Exchange, which we suggest shortening to “C-ME” (see me), has only recently come into the vernacular, due to its official standing as one of ONC’s three approved forms of Health Information Exchange (HIE), but in a non-electronic way has been around for quite some time (From the Office of The National Coordinator: The Strategy for Advancing the Exchange of Health Information). In fact, one of the authors recalls a conversation between two university students nearly 30 years ago – one a veterinary student and the other pre-med – in which the vet student made the case that a vet must be a better diagnostician than a medical doctor, as the lower animals have no way to personally share a medical history or clearly communicate symptoms!