I spoke this morning at an event outside Boston hosted by NAMI NH, the New Hampshire organization of the National Alliance for Mental Illness. The subject was “Best Practices in Mental Health, Prevention and Wellness for Military and their Families,” and to be blunt, a major issue is suicide prevention among veterans.
This video cites that in 2009, more veterans killed themselves than all the active duty soldiers who died in Iraq and Afghanistan combined – and many vets with war-related mental problems aren’t getting any services. Whatever your political views may be about the military actions themselves, this is a human tragedy.
I spoke about the patient engagement movement, starting with citing my own father’s service in World War II and my father-in-law’s – he returned not well, and though we can’t diagnose the dead, his lifelong explosive anger sounds like today it might be called PTSD. (I emphasize that we can’t know.)
Below are my slides. I sure wish my voice recorder wasn’t out of batteries – a lot was said that’s not in the slides. At bottom are the URLs for the resources I talked about.
In my speech I noted something important, where mental problems are involved: “To me, ‘patient’ is a collective noun.” Indeed, Susannah Fox’s work at the Pew Internet & American Life project shows that very often the person who’s googling or joining a community is a family or friend caregiver, not the patient him/herself. The point of this discussion is that the internet makes it possible to harvest this highly motivated resource (patients and families) and get them engaged in bettering care.
Here are the URLs for everything cited in the slides. (I’ll convert them to clickable links later.)
NAMI of New Hampshire: http://NAMINH.org
Slide 11 http://e-patients.net
Slide 12 Society for Participatory Medicine: http://participatorymedicine.org
Journal of ParticipatoryMedicine.org: http://jopm.org
Slide 13 HealthLeaders cover story, September 2009
Slide 14 HealthLeaders 20, December 2009
Slide 22 The treatment I received: Proleukin (brand on interleukin-2)
(Most kidney cancer patients who are medically qualified don’t hear about this treatment!)
Slide 28 Anatomy of an Illness as Perceived by the Patient (Amazon)
Slide 30 My book, Laugh, Sing, and Eat Like a Pig: Book’s website, with links to Amazon listings
Slide 31 ACOR
Slide 32 CaringBridge
Slide 33 PatientSite
Slide 36 Time’s cover story on anxiety, 2002; the interactive graphic shown here
Slide 39 The portable scooter I rented, by Tzora
Slide 42 My personal blog, The New Life of e-Patient Dave
Enough for now – I’ll continuing converting the URLs next time. For now, copy & paste.
Slide 43 http://e-patients.net
“Doc Tom” Ferguson’s white paper – three editions:
– PDF: http://e-patients.net/e-Patients_White_Paper.pdf
– Wiki (text version, editable): http://www.acor.org/epatientswiki/index.php/Main_Page
– Chapter summaries: http://www.acor.org/epatientswiki/index.php/Summaries
Slide 54 http://va.gov/BlueButton
Slide 55 http://govhealthit.com/newsitem.aspx?nid=75096
Slide 61 Monique Doyle Spencer – empowered “I’m not an e-patient” patient
Her first book: http://www.amazon.com/Courage-Muscle-Chickens-Living-Breast/dp/1886284741
This search (results vary from day to day): http://www.google.com/search?q=xeloda+side+effects
Slide 62 http://cushings365.posterous.com
This post: http://cushings365.posterous.com/day-260-in-the-life-of-a-cushings-patient
Slide 63 Susannah Fox’s work at the Pew Internet and American Life project: http://www.pewinternet.org/Experts/Susannah-Fox.aspx
(This quote was from a personal communication – I don’t know whether it’s been published)
Slide 66 http://Dr-Bob.org/tips/ptsd.html
Slide 67 http://forums.psychcentral.com/search.php – search for PTSD, traumatic brain injury, etc
Slide 68 Example – one blog on brain injury: http://www.lapublishing.com/blog/category/brain-injury-blog-postings/
This specific post – her articulate sharing of what her life is like with this externally-unnoticeable brain injury: http://www.lapublishing.com/blog/2009/surviving-mild-brain-injury/
Slide 69 www.TweetBeep.com
Twitter searches (require a Twitter account (free)), e.g. http://twitter.com/search/users?q=brain+injury&category=people&source=find_on_twitter
Google alerts www.google.com/alerts
Slide 70 (This is a shirt I saw in a shop window in DC this week)
Slide 71 Kerri Morrone Sparling’s “Six Until Me” diabetes blog: http://sixuntilme.com/
Slide 72 Kerri’s “vlog” (YouTube channel) http://www.youtube.com/sixuntilme
Slide 73 YouTube – record from your webcam, now. (No video camera or upload required) http://www.youtube.com/my_webcam
Thanks to NAMI NH for hosting me, and for the good work they do – and the same to the many people, military and civilian, who were in the audience.
Dave- I started working on on-line resources for PTSD in 2004 (see my letter in the NYT here). I wrote a briefing widely read in the Senate, and got an introduction to then-Senator Obama who supported advanced approaches. Through my efforts there was $10 million in the 2005 National Defense Authorization act to support on-line management of PTSD. While not strictly an earmark, the DoD viewed this as an annoyance (at the time, there was still a strong sentiment, supported by House Armed Services Chairman Duncan Hunter, that PTSD marked a soldier as “defective”), and the follow-through never really happened. If you or anyone else is ever interested in a huge amount of research, presentations, and even mock-ups and system designs, drop me a line. I got a lot of input from Army people on this, and periodically get a phone call to explain what we did.
PTSD is a really tragic but also interesting (from the scientist’s perspective) as a both psychological and neurological consequence of prolonged exposure to violence, and it is highly contentious. People have been diagnosed with PTSD when they have only been trained to perform traumatic actions, but never actually done them, and this technically fails the DSM criteria. Also interesting is a 2003 paper comparing Israeli experience with terror and New Yorker’s in 2001. New Yorkers (in the article) show much less resilience than Israelis, and I personally observed some people suffering from quite debilitating paranoia as a resident of Manhattan in 2001.
It’s good to see you taking your insight to that community. We’ve come a long way from 2004, when the idea of patient engagement outside the healthcare system–and thus, anonymously–was largely a dream.
Greg Blank says
As an Army National Guard medical provider we made the switch a few years ago in that PTSD is a mental INJURY, rather than a mental ILLNESS. The Soldiers are able to better understand that, it doesn’t matter how “tough” you are, ANYONE can develop PTSD, and it doesn’t matter how it happens, whether one large event or several smaller ones (or even low level exposure over a long period). The INJURY model also helps them realize that early treatment (usually) results in quicker recovery and greater acceptance by others of the Soldiers who need help.
e-Patient Dave says
I love that perspective – Greg – it’s not just a perspective, it seems more accurate. I’ll pass that along!
e-Patient Dave says
btw, for anyone who hasn’t seen it before, I posted on my personal blog last month about a talk I gave to a group of military physicians. Highly motivated, committed people.