Be sure to scan the 57 comments readers added, below.
The other day I announced my new skin cancer diagnosis and discussed how I’ll blog my approach to it as an e-patient.
I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine –
I’m approaching this through an RFP process because I believe in “participatory medicine,” in which patients play an active and responsible role in all aspects of healthcare. I believe patients should play an active role in making care more cost-effective and patient-centered, by being responsible about costs and by saying what they want.
Here’s the RFP, in Google Docs. At top right of that page there’s a place to leave comments, or discuss here. Thanks for helping!
Update: This triggered an enormous amount of discussion on social media, additional posts here (with the results of my shopping), and even an article four years later in the New York Times, which I posted about with additional thoughts and resources.
Additional posts about trying to be a responsible shopper for healthcare:
2/9/12: Time to practice what I preach: I have skin cancer again.
2/20/12: It turns out being an engaged patient/consumer takes time.
3/25/12: Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan
5/10/12: Decision: Just scrape it off. (“ED&C”)
5/21/12: Raw numbers for treating my basal cell carcinoma at three hospitals
6/16/12: A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”
10/1/12: Perceptions creating reality: the scapegoat dynamic and the role of the patient
11/11/12: Great Robert Wood Johnson video “This Cost How Much?”
12/11/12: Reprise: The healthcare waste pit is BIGGER than the fiscal cliff.
1/6/13: Pricing visibility – video interview with HealthWorks Collective
3/4/13: Let Patients Help, Cost-Cutting Edition: “Chaos behind a veil of secrecy”
3/11/13: The Big Ugly continues: “Hospital charges bring a backlash”
3/25/13: An encounter with the Swiss medical system
4/25/13: The reality of shopping for health insurance (pre-Obamacare)
6/5/13: “Chaos, behind a veil of secrecy”: Show me the cash flow
2/7/14: A new era: the “consumer-patient,” via Inquire Healthcare
3/11/14: How much should/could this pathology cost? (Skin cancer biopsies)
9/11/15: Article in USA Today soon with my opinion on costs, and online advice
9/21/15: USA Today article on “secret malarkey” of healthcare pricing
And my oldest posts about trying to understand health costs … note, not a thing has improved as of this update in 2019:
1/9/12: Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine
11/5/11: Let Patients Help, Cost-Cutting Edition, part 1: a bill.
The RFP is brilliant but I am concerned you will have few, if any, takers. This highlights an interesting paradigm. Is it worth eliminating a skilled or experienced physician from the “old regime” iin favor of a less experienced physician that embraces patient collaboration? Unfortunately, this is a choice we are often forced to make.
e-Patient Dave says
Kyra, my short answer –
1. Everything we do in life is a choice
2. I don’t expect to need to “eliminate” experienced physicians to find collaboration – the ones I work with are good AND welcome patient engagement! :)
Sorry to hear that you apparently have faced that trade-off. Here’s hoping we will all start expressing what we’d like, and that everyone involved can find what they like and need in this kind of relationship, as in all other parts of life.
Sara Elizabeth Siegler says
Here are the links to my melanoma clinical trial (draft) and melanoma wiki, respectively: https://docs.google.com/document/d/1ZjmVEbedeBkJRzwDeNhNnzaIZS8JNFr36eR-NIO7eOs/mobilebasic and https://sites.google.com/site/sesdoesmelanoma/
Additionally, here is the link to the letter I sent to the Secretary of Defense Leon Panetta to request funding for the aforementioned clinical trial: https://docs.google.com/open?id=0B-GSx_EpgeeJZGE5NjExM2MtZTgzYS00OWUwLThiMjAtNGVhNTNiZGZiMTM2
Don’t believe it! this paper should make the news! It’s the first time, in my knowlegde, a patient goes openly shopping for a physician…because in reality we try to find these facts under cover..
Well, curious about how it will be received by the medical community there…In Greece, it would simply be considered as a “joke”, no physician would dare answer it… our physicians are still very very conservative, they don’t like, try to avoid so extrovert patients….
Jonena Relth says
Your RFP is an awesome example of your thinking outside the box! What a great idea!! I’ve written and answered many RFPs in my career, but none to date for my medical care. When I chose my current primary physician, I had a list of requirements such as the practice had to have an EHR that was accessible 24/7 by everyone on call.
Why should choosing the best/most appropriate provider to partner with us on our medical issues not be the same as any other “purchase”? I know that docs cringe at the thought of being described as “service providers for consumers”, but this is exactly what it is. As a consumer, you are simply evaluating your criteria for which/whom you want to treat your skin cancer.
I look forward to learning how the process goes and the responses you get – positive and negative.
You remain my Participatory Medicine Hero!
I believe in personal research, to share with patients like me, and contrast with the physician. David, you’re an example to all.
Before commenting on the RFP – just want to say I am sorry for the diagnosis and wish you well.
Now – about the RFP- the concept of the RFP is AWESOME. Creating it is a great process for patients to define what they want and relative priorities – even though at this point in time I think getting clarity about the charges is more challenging than getting quality care. But you have set the bar. I can see future iterations of this as an RFP “checklist” for patients.
e-Patient Dave says
Hi Robin – I know some providers are offering guaranteed all-in prices, though I don’t know if any will pipe up on this.
And as with any RFP, if nobody offers everything I asked for, I’ll decide what to do next.
Mark Harmel says
Interesting approach, although I’m not sure that it will land you the best treatment.
The first question is whether or not the insurance rules changed for someone like you with pre-existing conditions. The link I found says that you must be uninsured for 6 months, but with new provisions of the ACA kicking in there may a short term fix while you wait for a new provision to become active.
The second issue is that you want to find either the best a or a good surgeon for your condition. This involves either asking in the patient community, or do as my MD wife would. She would ask her great oncologist friend for a referral, he who would know the the best people in town. This is one of those informal processes where the network of good doctors know who the other good ones are. Wealthy people know this and make a point to nurture and support good doctors so that they live a long and healthy life. (There is also a problem with this system, but that is a different story.)
Those good doctors may be offended with your RFP, but they would be fascinated with your story and could show consideration with their pricing. A cash payment today at a Blue Cross rate that they get 3 months form now could be attractive. This sort of deal may only work with someone in private practice that has the leeway to negotiate.
The other consideration is how pretty you want to look? A simple scrape it off approach could be as effective treatment compared the the Mohs, but it would leave a scar.
I would be interested is hearing what doctors think of your approach and what advice they would give.
e-Patient Dave says
Hi Mark – I don’t understand – MOST states have a 6 month waiting period, but New Hampshire has a zero wait plan, which I got.
I’m not the least concerned about anyone who’s offended by me saying what’s important to me, which is all the RFP says, right? I know that none of my existing docs at Beth Israel Deaconess are the least bit offended by it.
Now, some BUSINESS people at a hospital might be offended by my wanting to know what they’ll charge me, but they’re not doctors.
And besides, I’ll stick to my guns on this – it’s my money and my carcass, and I’d like to know on what basis someone would say it’s improper for me to express what I want, especially in a document that says I’m open to discussion on almost everything.
Love it. It’s my money and my carcass! It is true. You are the CEO of your body! and you should run it like a business. I am completely on board with this approach. I will use it when I shop around for someone to “control” fracture my femur to dig out my titanium! Thanks for the inspiration!
some points Mark:
– Most payers now pay within 2 weeks, not 3 months.
– Mohs procedures leave scars as well (we can’t promise no scar; any doc who does is foolish because it is not entirely up to the doctor how you heal).
– A skin cancer should see a skin doctor – people focus on this one lesion, but you need a complete skin exam from head to toe including between the toes, genitals etc. 40% of patients that make one of these will have another down the road. You need councilling on sun protection and regular follow up for skin surveillance the frequency of which should be determined by the level of your existing sun damage.
– Oncologists often deal with radiation docs – a really terrible solo treatment choice in your case, in my opinion, most oncologists are not dealing with common basal cell carcinomas. See Derm.
As a Mohs Surgeon I will give you a lot of information and respond to your request, however we do need some more information. Basal cell carcinoma comes in different sub-types; that should be commented on the biopsy pathology form; specifically is it nodular, superficial multifocal, fibrosing, infiltrative, micro nodular, baso-squamous, adenoid cystic. The subtype is what helps us know what treatments are sensible to offer. So let us know and we can go from there.
Joe Shaffer MD
e-Patient Dave says
Terrific, Joe – thanks! I don’t have that info yet, but I’m sure I will soon. I’m grateful for your helping me learn my way around – unlike many RFPs, on this one I don’t have mastery of the field where I’m buying the service.
One important initial question – I know you can’t be precise at this point, but order of magnitude, what’s the price range? I’m sure it’s not $500-$1,000, but is it ballpark $3-5k, $5-10k, $25-40k, etc?
A frequent criticism of American Health Care is that pricing is not transparent. There are reasons for that, but they are not conspiracy theory worthy, usually its because we often don’t really know. Sometimes we liken it to calling up a restaurant and demand to know how much your meal will cost; they are at a bit of a disadvantage without knowing what you are going to order. Well, the doc does not fully know what is going to happen when we see you. There is nothing conspiratorial about it; you may present with a ‘spot on the face’. We might know right away that it is a benign lesion (non-cancerous) that requires reassurance and not testing or treatment. Cost – maybe $50-$150 depending on the doc. It may end up being a metastasis from an internal tumor – biopsy, imaging, hospital stay, major tumor resection, lab work, a complication in hospital, one night in intensive care (expensive scare), cost $350,000. So how much is a spot on the cheek going to cost – “it depends” – you darn doctors are hiding something. You get the idea –
well here is your answer
no treatment – free – done if you have a serious other condition that is likely fatal in the next 6 months, we would advise against getting this treated, there is no point, it drives up the bill and gives you no real benefit, unless it is symptomatic.
A simple scraping procedure in office, under local anesthetic, wound heals by itself – ?$200 ?$300
A prescription anticancer cream- used off label when on the face – buying without insurance $750, but if there is some sort of insurance then discounted to anything from $20 co-pay to maybe half the cost of the drug.
An excision under local anesthetic without good cancer margin control and a direct repair – maybe $350 to cut it out, $350 to stitch it up, $200 for pathology on the excised specimen (range $800 – 1200)
Mohs Surgery Removal – clear in one stage, repaired in a linear fashion (Mohs $600-800, repair $500-600)
Mohs Surgery Removal 4 stages, reapir with a skin flap (Mohs, $1700, Skin Flap $1300)
Radiation Treatment (not my field) – $5000-$8000
What factors go into a choice – the type of tumor, cost, cosmetic requirements, access to trained physicians who know what they are doing (there are no requirements that you be trained in Mohs Surgery though many of us are properly trained – Fellowship trained), you physician condition (able to tolerate the procedure and look after a wound), your social condition (are you traveling all the time, do you have a big event coming up, are you in the public eye often, is your insurance about to run out in a week), you ‘cure rate’ level of comfort – knowing this is a ‘low level tumor’ are you OK with a cheap, quick procedure that may give you a 90% chance at a cure, or do you insist on a 99.9% cure rate but it may cost $2,000 to $3,000 and require half a day in a doctors office.
Some doctors are very good at communicating these things to patients; we have numerous studies that show that maybe 10% of information given to patients is retained at the end of an office visit, even people questioned within minutes of leaving the office. So “The Doc did not tell me anything” may not be the case.
Other docs do a terrible job of explaining choices and the reasoning behind it.
As you can see we need more information from you to make sensible recommendations. There is a lot that goes into medical decision making and much of it happens behind the scenes, it may not always be conveyed to the patient.
Sorry to get off track but it is complicated.
My bottom line though is that this lesions could probably be treated for between $300 to $3000, in that sort of range.
e-Patient Dave says
Joe, I didn’t say so the other day (I was moving too fast) but I’m THRILLED at your detailed, wonderful, informative and empowering response. Thank you!
PS: I am not your doctor but the first thing I do tell people is that this is basal cell, not melanoma and it does not turn into or progress to melanoma if neglected. There are 3-4 million cases of BCC in the USA every year, they do not keep exact data because it is so common. There are probably less than 50 cases each year where BCC spreads around the body, essentially you don’t have to worry about that, especially with a lesion that looks the way yours does.
Mark Graban says
Dave – first off, sorry to hear about the cancer diagnosis and I wish you swift, cost-effective, error-free treatment.
Thanks for sharing this RFP online. What an innovative approach. I’m looking forward to following your progress and the response that you get.
e-Patient Dave says
It’s a pleasure to hear from you, Mark!
All, Mark Graban is the author of Lean Hospitals, and he co-led my hospital’s terrific Lean quality improvement workshop in 2010, which I participated in and blogged on my old website. He knows his stuff, not just theoretically but with practical experience.
Note: my hospital had patients participate in their quality improvement workshop. Listening to patients, during the process, not after. And yeah, more than once the customer’s voice altered the discussion.
Notice something here:
In hospitals as with cars and everything else, Lean isn’t about cost, it’s about doing what the customer finds valuable, and only doing that. That’s exactly what I’m trying to accomplish with my RFP: I’m sayin’ what’s important to me.
If we don’t do that, how can we expect to get what we want?
John Phelan says
Dave, thanks for your continued leadership here. I too had skin cancer, some 17 years ago. My dermatologist dicovered a mole on my back, had it excised, and it came back positive for carcinoma. He wanted to do an immediate second in office “suregry” to go deeper and removed more tissue. I said “hold on” and I asked for time to get a second opinion, which he respected. I was able to get to see the Chief of Dermatology at Sloane Kettering in NYC. With slides in hand, he took me to the lab and peered under the electron microscope at my cells. He asked me what my derm had recommended, and when I told him, he said to follow his plan and do it immediately. He said that I was lucky: 6 more months and I would have been looking at Chemo and Radiation. I returned to my derm and we did the second cut. I still see him today and have a mole mapping done annualy. I do not remmember the cost of this but I would say that a good dermatologist probably saved my life. I wish you well on your treatment path and I and many others are surely wishing you a speedy recovery.
e-Patient Dave says
Great to hear from you, John! I love what you folks are doing at Zweena Health … when we chatted a few months ago I didn’t have time to dig in as we discussed, but I sure like the idea of “Gimme my data,” because although my case here is pretty simple, the ability to choose a provider for anything more complicated would REQUIRE taking our records with us, which seems to be what you offer.
Thanks too for the first-hand patient story. What kind of cancer was it?
John Phelan says
Thanks Dave for your comments about Zweena. Yes, like you, my cancer was a basal cell carcinoma. Caught it early and I am lucky. Now any time I see a mole, on me or anyone else, I am immediately suspicious. We need to be vigilant and you are the king of vigilance!
Bob Swerlick says
There is a constraint on any provider who answers your RFP. Whatever discount they offer to you would need to be applied to any Medicare patients they also see. If they were to discount your procedure more heavily, they would be committing health care fraud.
e-Patient Dave says
That’s terrific to know, Bob – thanks so much. A great example of something I wouldn’t have known myself.
I’ve been learning a lot from other feedback (off-blog), and I need to tilt my task list so I succeed in joining those patient communities, aggregating all I learned, and make a decision!
[I fixed a typo – Dave]
We just can’t charge less than medicare. A provider in our community provided free care to someone with no money and was fined $50K by the government. What an AWESOME system we have !!!
The real problem with your RFP is that, at least were I practice, physicians are so overwhealmed with patients that we rejoice when there is a cancellating in the schedule.
The idea that someone with a large amount of business is going to bend over backwards to bring on extra business may not pan out. You deserve respect and caring informed treatment, but so does everyone else.
Let me know when that subtype appears.
e-Patient Dave says
Thanks again, Joe. I very much appreciate the feedback.
To be clear, I don’t in any way want anything that another person couldn’t get. That’s why in the RFP I said “Don’t offer me anything you don’t want the public asking for.” I’m not “me shopping,” I’m looking to improve heathcare, really.
And I hear you about the systemic obstacles. Good learning. More than once I’ve blogged here “Let’s see what happens when a patient tries to…” This one’s not going so well. So, plan B, if the info’s not coming to me, I still need to find it.
MOHS Surgery - Virginia says
Wonderful post! Very informative from the post and the comments!
Bob Abrahamson says
While I’m not a fan of his politics, Goodman is not simply a right wing blowhard. But that’s beside the point. You probably already heard about MediBid but maybe worth looking at as part of the BCC RFP process.
e-Patient Dave says
Today I learned about Medibid, a site that lets you ask for bids. I spent $25 to ask for bids on Mohs, just to see what I’ll get back.
As before, I am NOT shopping for the cheapest – I’m just exploring. This is new territory, and I want to see what a clueless person can find out, and can’t find out.
Dave, I’m very sorry to hear about your condition, but happy that you are trying to achieve competition and transparency in Medical Pricing. That’s exactly what we do every day, and last year we achieved over one million dollars in savings for our patients. If you’d like to make a request online at MediBid.com I’ll waive the fee for the request. Just contact me direct and I will send you a coupon code for it.
e-Patient Dave says
Thanks, but a thorough read might have let you see that in the comment above yours, I noted that I did go to Medibid.
And honestly, not to put too sharp a point on it, the responses I got were useless (far too little information) and in one case pretty stupid – somebody who said he wasn’t yet licensed, if I recall correctly.
ok, I found the request. It took me a while because of the category it was under. I see 2 responses, at least one of which seemed very reasonable. Understand, that a physician can not diagnose or render a medical opinion by email without first examining you. I see nothing from anyone indicating that they were not yet licensed. Each doctor with MediBid is licensed in his or her home state. They may or may not be licensed in your state, but if you see them in their own office, that is not necessary.
Also, you included a link to an external URL which is not a HIPAA compliant secure site. If you upload that document as a PDF then the physicians may examine it on the secure MediBid portal.
If you upload the document, and remove the URL reference, I would be happy to leave your request open, and send it out to physicians in a second category for you.
Please email me directly if you like, or call me at 888-855-6334.
Calvert Louden says
Dave, I believe that you have the right idea here. It is very important that we as consumers ALSO take responsibility in the administration of OUR health care. Too many consumers leave their health decisions to doctors who are qualified; but because of a lack of engagement on the part of the patient, doctors’ decisions might not be in the best interest (either financially or emotionally) of the patient.
I applaud you for taking a such a brave step in not only publicizing your own health concerns but allowing discussion as to what avenue of treatment you may take is quite commendable! It is very important for the health care industry to know that even doctors are human and suffer as we do; they struggle with health conditions and avenues of treatment just like us. This industry is a TEAM SPORT, and we must all communicate our wants and concerns in order to better serve the industry. Kudos to you my friend, and I wish you the best in your recovery. It was a pleasure to have run across this page and interact with you.
There should be more doctors out there like you, willing to make our industry transparent, so the quality and efficiency of our delivery system can improve.
Ralph @ MediBid says
The competitive purchasing most businesses use relies on an RFP, and so should medical treatment. That is what keeps costs down, and pricing transparent. Thats what we do at http://www.MediBid.com with every request for care, we tender it out all over the earth.
The problem with “healthcare” in America, is that “healthcare”, is really a health insurance plan, and that means it is a financial instrument. A financial product and be highly leveraged, and leveraging a product creates a bubble…think about the housing meltdown of 2008. It was driven by sub-prime mortgages. The same is happening in healthcare today
e-Patient Dave says
Ralph, I’m glad you came here.
I posted my case on MediBid. Please look it up and see the idiotic response I got. Are you doing anything now to prevent unlicensed people from bidding as providers?
e-Patient Dave says
I just went back and resurrected my request on Medibid, and the responses I got.
As my comments above said, Medibid was not a good experience for me. I got two bids that (as I said above) contained way too little information for me to make any kind of informed choice.
But looking more closely tonight, I saw that the site appears to be managed by people who don’t speak English too well, which in an English-speaking market is unprofessional and careless, leaving me with no confidence that the company is careful about ANYthing. That’s not where I want to get medical care.
In just a few minutes I saw this:
– In a password reset email: “We suggest you to change your password after login.”
– “Contact bidder for a revise bid.” Sorry, Ralph, but that should be “revised.”
I did, back then, receive a bid note (I assume it was *on* their site, but maybe it was an email) from someone who said he’s not licensed to practice yet but he’d do it for $400. I can’t find that note.
It looks to me like a hustler site, people scrambling to make a buck, though I’m sure it’s not intended to be that.
In my view people are welcome to shop however they want, and take responsibility for what they found. Personally, I found no way to assess the quality and reliability of what I’d be buying, and for me that’s a non-starter.
MediBid too says
I’m sorry your experience did not live up to your standards. To be fair,
I looked up your request and saw you gave VERY little information about your current condition and what you wanted…3 words to be exact. You wrote more about your history. Perhaps physicians did not think you posted enough information to respond accurately (to be fair to you, our employee should have asked you to be a little more specific about what you were looking for). The responses you did received told you the price and what was included. You also had the ability to see each Bidder’s education, training, and other credentials. Had you accepted a bid, you would have received their licensing and contact information so you could make sure it is a doctor/medical facility you would want to go to. If you weren’t satisfied with their credentials, we would have re-open your bid at no cost.
It is NOT POSSIBLE that someone unlicensed could have approached you as you say. The bidders to not see any identifying information, nor do they have any way of contacting you outside the confines of the site and outside of submitting a bid.
As for someone that does not speak English managing the site, what does that have to do with how trustworthy the site is? I know many fine, intelligent, upstanding individuals who don’t speak English as their 1st language. The individual that made those 2 small typos is one of the original 9 coders for Ebay and works for Amazon. English is not his 1st language, but he is an EXTREMELY intelligent, highly educated, upstanding American citizen. Yes, we could have done a better job editing, but that does not make MediBid “hustler” site.
You say you were going to give an unbiased review of the process…I don’t see this as unbiased. A MediBid employee was very kind to give you a free coupon to test the site. This employee was trying to help you out. The employee should have helped more, especially considering their offer and taking inconsideration that neither your location nor your request type are very big markets for MediBid, but that is beside the point. There are current practices in place, that I personally established long after your 2 year old request was made, that would have given you a better experience despite that.
I hope that what you made the request for has been taken care of and that you are in good health. I also hope you can find it in your heart to see the good in what MediBid tried to do for you and understand that despite it not working for you, it has in fact worked for a large number of people.