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Smart Patients

Alexandra's picture
Alexandra
Posts: 1264
Joined: Jul 2012

There is a new web-site for cancer patients and caregivers called www.smartpatients.com.

It is migrating users from ACOR.org - Association of Online Cancer Resources and so far is mostly populated with kidney cancer patients and parents of children with pediatric cancers. However site owners have larger plans for ACOR Jr and invite patients with other cancers and their caregivers to join.

I spent 5 days on this board, poked and tested everything and de-activated my account, when there was nothing else left to see.

Here are my impressions so far. I recommend that you join and form your own opinion.

Site users are constantly referred to as "smart patients". The term is designed to compliment and encourage users who educate themselves, who get involved in pharma R&D, who challenge doctors and insurance, as well as to imply their intellectual superiority to other cancer discussion boards' members. From overuse "smart patients" rhetoric becomes a little patronizing and annoying, like parents applauding their bright toddler who learnt to tie her shoelaces.

Site is not broken down by cancer board. Instead it uses "tag" system, where people with different cancer interests can follow different tags. Which means that you get more interaction with other patients and more relevant information about common drugs, side effects, research, etc. Takes a few minutes to understand and get used to how it works, but not overly complicated.

I got the feeling that site owners are steering "smart patients" with different cancers into "crossing disease boundaries" and "cross-pollinating", but users are more comfortable inside their own silo. Many users are asking how to filter out content not related to their own cancer.

Site is private and secure. Unlike CSN their conversations can't be seen on Google and other search engines.

There is no spam, because every new user's first post is moderated.

There are options to receive an email with every post update (quickly fills up your inbox) or a periodic digest or to turn emails off all together.

Site has a link to clinical trials search and a neat way to save and comment on trials.

There is virtually no content devoted to gynecological cancers. It's up to the new users to populate it with information.

The site does not have user-to-user messaging or a chatroom yet; formatting is very minimal and does not allow upload of files / pictures / avatars.

Like any start-up it's work in progress and still has glitches. With users' feedback they are being quickly fixed.

People there are very nice and responsive. Especially Robin M, the administrator, Kevin L, the programmer and 2 owners: Gilles F and Roni Z.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Alexandra, I'm sorry to see that no-one  has responded to your astute appraisal of the new Smart Patients website, but I hope that some here may have followed your exhortation and taken a look at it by now.  I think it represents an excellent overview with some characteristically acute criticisms (though I think some of your ejaculations may be premature, as I'll suggest below - you always say you have the male mindset Laughing).

First, may I must ask you to reconsider your current de-activation?  Intelligence and judgment like yours are rare anywhere and you made a valuable debut on SP, as acknowledged by no less than the 'kosherfrog' himself, Gilles Frydman, founder of ACOR, a man of considerable intellect and a leading figure in the patient revolution of 'participatory medicine'.  

You may want to defer a re-visit for a little while until the dust has settled a bit more - a handful of us have been testing the site and making suggestions and requests to the development team for many months now and the site is still being improved apace.  You may have exhausted its current value for you and have better things to do than experience diminishing returns there,  considering you have better things to do like tuning Genny, jailbreaking, taking trips to Israel, whatever. 

However, when it's in a less inchoate form, perhaps you could lead the sisters in piling in there and setting up appropriately dynamic sections on breast, ovarian, uterine cancers? I can think of no-one better equipped intellectually (and in terms of experience) to do so.  It had to start somewhere and it's just a historical accident that it began with mostly a small bunch of us from ACOR's now frozen KIDNEY_ONC forum, and one or two others also moderated by the redoubtable Robin Martinez.  SP is now starting to open up to all other cancers and is ripe for development with the big ones you're associated with (far larger than the small kidney cancer community). 

We love our CSN and will probably hang out here as long as we last but as you know, the remit here is principally one of reciprocal support and comparing of notes, at an inexpert level.  The ACOR forums and, now SP, are where the serious academic dialogue goes on and where one can pick the brains of professionals and members who have been in ACOR since before CSN even began.  It's also where those of us in desparate straits congregate and can get access to the most up-to-date information and wise counsel that may keep us around for a bit longer.  Consequently it's a lot more intense but not without the sort of earthy humour in which you excel!

I can't fault anything you've said about the name and I hope that the elitist patina will be allowed to fade as the site becomes more established.

Your summary of the putative merits of the 'tag' system is similarly well-taken. However, what's a cinch for you will doubtless take much more effort for many prospective users to grasp.  I've been banging on there for the last seven months or so (as I have here, on CSN, for a lot longer) about the need for more rigorous information organisation and retrieval capabilities and the highly intelligent and responsive dev team are making enormous strides in this respect, though still with some way to go.

For instance, they are acceding to the requests you observed to allow users to very easily delimit their areas of interest, while still preserving the scope for looking at concerns common to all cancers (matters like nutrition, exercise, depression, meditation, suuport organisations etc).  Some of us, such as my pal (though we'll probably never meet) NanoSecond and myself who each write a lot on the CSN kc forum, are keen that the 'cross-pollination' you've alluded to is exploited as fully as possible.  However, you're dead right that many users wish to remain in their silos.

Your remaining one-liners are spot on (UK phrase for 'dead right').  Search engine optimisation is a priority for pointing people to SP but the privacy will be protected for the foreseeable future by requiring a request to join to validate the genuineness of the applicant and also obviate spam.  I personally operate with emails turned off and have just written with my observations on the first weekly Digest, issued a few hours ago.

The 'notebook' facility for recording trials of interest, with a field for one's own glosses on them, is very useful.  There now is a private messaging capability and the scope for new media, such as pics, is on its way.

Your comments about the key personnel are apt and it's worth mentioning that each of the four you name is a major force in the cancer world, and Roni Z is prominent on You Tube and world conferences and is the former six year health supremo at Google!

I'll now spoil the congratulatory tenor of the above (but I hope only slightly) by assuring you that you've got the measure of Gerald White all wrong.  I can entirely understand your take, which I'm sure many others also arrive at, but if you were to really go up against him, feisty and formidable though you are, he'd have you for breakfast. He can't be described as in any way "the main attraction" - he's only just joined SP (just about the same time as yourself, in fact) and has only made a handful of postings thus far. 

He is in no way a leader of a cult and to call him a snake oil pedlar is a total travesty.  He is contemptuous of mediocrity and also every bit as disgusted with exploitative hucksters as you or I - probably more so, in fact.  He's at the opposite extreme from the con-men.  Still very active in his 80s he has, for decades, selflessly devoted himself and his personal fortune to helping fellow cancer sufferers.  He was born into dirt poor West Texas in the Dustbowl era of subsistence farming and purely by his own efforts became a highly-educated, literate scientist and technologist, held in great esteem in high circles around the world. As an exceptionally successful engineer and physicist, he made his fortune with a transformational invention that has impacted oil-production throughout the world.  That fortune he's ploughed into supporting fellow sufferers.  He points out that his guided meditation CD and book is intended as an adjunct to, and in no sense a substitute for, appropriate medical treatment. 

You haven't seen his book so you won't know of the sustained compassionate support he gave to the now-deceased Jewish Swede, Andreas Bette, an eminent Professor of physics and mathematics with whom he formed a close friendship and for whom he did all he could.  The program he devised for himself, after being given the prediction of 3 months to live following unsuccessful HD IL2 treatment many years ago, is frankly derivative and in the traditions of meditation, progressive relaxation and positive affirmation. 

Perhaps you've already explored those realms?  If not, then I commend them to you.  His CD, for instance, can be used at home whenever you want and doesn't need a trip to Ein Gedi or even the Toronto Wellspring to get good results.  I sincerely believe it could contribute to you living way beyond 52, see Shirley's grandchildren and die of something other than cancer.

You got the life and you're gonna keep it.

Alexandra's picture
Alexandra
Posts: 1264
Joined: Jul 2012

I was fairly sure that you or Neil would respond, so I was patiently waiting and was not disappointed. Thank you for paying close attention to my personal life and for many compliments. If I die of anything other than cancer, it would be of embarrassment. No one has yet accused me of "premature ejaculation", it must be one of lesser known side effects of hysterectomy. I never claimed to have a "male mindset", I wrote about my "man's morals", which is a paraphrase of a popular joke, that I will not repeat here in order not to offend the population of this board.

The reason I de-activated my SP account had nothing to do with the site itself, but rather with my obsessive need to constantly read and post to fill it up with information. My extracurricular activities there started interfering with my full-time job and I cut myself off to remove the temptation before I get as emotionally involved in SP as I am in CSN. SP is a fine start-up and I liked most of it. I hope it grows bigger and better; I restate my advice to enyone who may be reading this to sign up and check it out.

I edited my original posting to remove any mention of Gerry and his products. Only out of respect for you personally; neither because I've changed my opinion, nor because I am too worried that someone would "eat me for breakfast". Let's agree to disagree on that one.

All the best and thank you again!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A pleasure!  It would be something of an achievement to embarrass you, I reckon. Sorry for the poetic licence over 'mindset'.  How are you keeping?

Alexandra's picture
Alexandra
Posts: 1264
Joined: Jul 2012

Hey you know me so well... You finally managed to do what Gary never could. Embarassed

Today was my first time in public without a wig. Strangely liberating. Drove rental car 4.5 hrs from Toronto to Detroit. A little shopping for shoes after work, a new pair of jeans I convinced myself I need because they were teal in colour, hot tub at the hotel, and a tall Guinness to finish the day right.

3 straight days of mind-numbing business meetings ahead of me. "Glamorous" life of the travelling automotive buyer / cancer patient / absentee mother and wife.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

So good to see the 'take no prisoners' attitude is still fully intact - got a lotta living to do.  Shoe shopping, hot tub, Guinness nightcap all sounds good to me.  You need a Gary at the meetings, though!  He's an engineer but anyway he would turn the mind-numbing into a riot.

I'd better get off the Sisters' turf but hope to see you sometime on SP if you can muster the restraint to not over-commit to it - I guess that's a vain hope because you don't do restraint do you?  Maybe you'll drop in on the kidney cancer forum again, one of these days, and liven it up even more!

 

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