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demand-driven-open-data / ddod-intake

"DDOD Intake" tracks DDOD Use Cases using GitHub issues. View the main DDOD site here
http://ddod.us
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Analyze drug cost trends from Medicare Part D #26

Open dportnoy opened 9 years ago

dportnoy commented 9 years ago

Requirements: https://github.com/demand-driven-open-data/ddod-intake/wiki/Use-Case-26 Moved to: http://hhs.ddod.us/wiki/Use_Case_26

Requester: @rxdata Source: Phone call with Lawrence at rxData on 4/2/2015 Notes from call:

FlaviuSim commented 9 years ago

We need the same thing. The drug costs and payment data and DIR fees charged to the pharmacy would help us make things more transparent for pharmacies and patients.

dportnoy commented 9 years ago

@FlaviuSim, go ahead and add your requirements to https://github.com/demand-driven-open-data/ddod-intake/wiki/Use-Case-26 (Moved to: http://hhs.ddod.us/wiki/Use_Case_26)

dportnoy commented 9 years ago

@rxdata, @FlaviuSim, I would like to confirm 2 questions for this use case:

  1. Could you please take a look at the data dictionary (https://www.ccwdata.org/cs/groups/public/documents/datadictionary/data_dict_pde.xls) for CCW's Medicare Part D Event (PDE) File and let me know whether it has all of the fields you need?
  2. Can you give me a sense of the challenges or questions you've been encountering with ResDAC and CCW?
dportnoy commented 9 years ago

Created starting point for Solution 26, including info from CCW, ResDAC, HealthData.gov, CMS public use files (standalone, synthetic)

FlaviuSim commented 9 years ago
  1. The CCW is released too late after the fact, and is very difficult to submit a request and it is only for research, rather than anonymous data for any commercial purpose.
  2. The ResDac data is often late, inaccurate, but most importantly, insufficient as it does not have any actual relevant dollar figures of reimbursement for a specific drug.
RxData commented 9 years ago

Thanks, David! This is helpful!

  1. For our purposes, this could be a great starting point (those fields).
  2. Is CCW (ResDac)'s data available for commercial purpose? I.e. can we integrate it to our platform? If so, what is the application process for using the data? Any specific conditions? Or are we only "allowed" to use the 2008 BSA PDE PUF, and the CMS 2008-2010 DE SynPUF?
dportnoy commented 9 years ago

@FlaviuSim, thanks for your insights! Follow up questions please...

  1. What lag time is acceptable for it to be useful to your application?

    "The CCW is released too late after the fact"

  2. Have you submitted a request, when, and what response did you get?

    "...and is very difficult to submit a request"

  3. Could you please provide more detail about your understanding about such submissions? Perhaps what online materials are you basing your statement on?

    "... and it is only for research, rather than anonymous data for any commercial purpose."

  4. Can you give an example of how it's inaccurate?

    "The ResDac data is often late, inaccurate, ..."

  5. Can you identify which fields ResDAC provides vs. which fields you need? (Looks like the PDE data dictionary shows 5 fields with dollar figures.)

    "...but most importantly, insufficient as it does not have any actual relevant dollar figures of reimbursement for a specific drug."

dportnoy commented 9 years ago

Adding potential workaround for ResDAC for for-profits. Companies could fund research, as long as it's conducted by a separate body and they agree to see only the results.

dportnoy commented 9 years ago

@RxData

  1. Thanks

    "For our purposes, this could be a great starting point (those fields)."

  2. Officially non-profit research only. But give me a bit of time to figure out if we could find an adequate solution or workaround.

    "Is CCW (ResDac)'s data available for commercial purpose? I.e. can we integrate it to our platform? If so, what is the application process for using the data? Any specific conditions? Or are we only "allowed" to use the 2008 BSA PDE PUF, and the CMS 2008-2010 DE SynPUF?"

  3. What's the minimal refresh interval and maximum lag time for this data to be useful for your application?
FlaviuSim commented 9 years ago
  1. At the very least by-weekly, if not weekly.
  2. I have not myself but heard from others that have tried and were unable to complete the process.
  3. Honestly, I have not looked at it in a few years, perhaps you can point me in the right direction for the CCW request.
  4. It is released monthly but often with data far longer than a month ago. It misses certain drugs and plans, or formularies can be incorrect. I can come up with some specific examples from the past.
  5. The CCW fields you sent above are perfect, if they existed in the ResDac data, it would be fantastic.
dportnoy commented 9 years ago

@FlaviuSim a specific example for question 4 would be fantastic!

"It misses certain drugs and plans, or formularies can be incorrect. I can come up with some specific examples from the past."

dportnoy commented 9 years ago

@FlaviuSim, @RxData I talked with ResDAC. It seems even if you were allowed to get the PDE data (which I'm still working on), it would be quite old. They say it's released annually and 2014 won't be available until the end of 2015.

My question to you is this... Have you looked at the prescription drug files that are made available by CMS for purchase, especially the ones listed below? Recognizing that it's not exactly what in the Use Case requirements, is it at all useful to you?

FlaviuSim commented 9 years ago

No it is not. We posted on this page precisely due to this insufficiency.

dportnoy commented 9 years ago

@FlaviuSim could you elaborate on insufficiency... For example, do you specifically need atomic event-level data? Or is it the lag time for quarterly pricing file? Or specific fields missing?

"No it is not. We posted on this page precisely due to this insufficiency."

BTW, if you need atomic event-level, which PII fields are needed? (There's a best practice that there must be at least 11 beneficiaries within any 1 combination of personally identifiable fields. Otherwise it's redacted.)

FlaviuSim commented 9 years ago

we don't need any beneficiary PHI fields whatsoever. Just the other PDE fields for a specific drug, pharmacy, and plan.

dportnoy commented 9 years ago

Great. Thanks @FlaviuSim. I'll look into stripping: BENE_ID, DOB_DT, GNDR_CD. There may be pushback on SRVC_DT, since it's similar to the PHI for admissions and discharges. (Can we truncate dates to the year? Unfortunately, that might mean up to a year lag time to prevent date re-identification.)

"we don't need any beneficiary PHI fields whatsoever. Just the other PDE fields for a specific drug, pharmacy, and plan."

FlaviuSim commented 9 years ago

We can do without the SRVC_DT. One date, such as the paid date (PD_DT ) should be enough.

dportnoy commented 9 years ago

Created page for full use case specifications and solution: http://hhs.ddod.us/wiki/Use_Case_26

betshsu commented 8 years ago

@RxData CMS recently released the PDE as part of the data release for innovator research http://www.resdac.org/cms-data/request/innovator-research. Instructions on how to apply for access and pricing are on that site. Does this meet your needs or are there still deficiencies in the data?

@FlaviuSim I believe that the release still may not need your needs because of the time lag and refresh rate, is that correct? Could you document what issues still remain with the data that is now available?

Thanks.

cornstein commented 8 years ago

I believe it is in CMS' interest--and in the benefit of the ongoing important national discussion--to have more real-time information on payments for drugs (in the aggregate). I would support figuring out a way to see this data refreshed with minimal lag.

betshsu commented 8 years ago

ResDAC has indicated that at the moment, there are no intentions of reducing the lag time on the PDE data to less than one year, as it takes a full year to receive fully mature claims. If the data were to ever become available on a quarterly basis, an announcement would be posted on the front page of the ResDAC website.

dportnoy commented 8 years ago

Updated http://ddod.us/wiki/Use_Case_26#Solution for clarity, due to renewed interest.

dportnoy commented 8 years ago

@FlaviuSim @RxData @cornstein, I just had a discussion with somebody who is trying to obtain drug rebate data that PBMs negotiate with manufacturers, since without it it's not possible to determine the bottom line cost of a drug claim. Are you already using contracted rebate data in your analysis?

Relationship of drug claims and rebates Source http://www.dol.gov/ebsa/pdf/acdanzon061914.pdf

FlaviuSim commented 8 years ago

We do not have rebate data. Where would you be able to access that?

Flaviu Simihaian

Co-Founder and CEO, iMedicare https://imedicare.com/#/

Phone: (800) 817-6526 x100

On Thu, Apr 14, 2016 at 12:42 PM, David X Portnoy notifications@github.com wrote:

@FlaviuSim https://github.com/FlaviuSim @RxData https://github.com/RxData @cornstein https://github.com/cornstein, I just had a discussion with somebody who is trying to obtain drug rebate data that PBMs negotiate with manufacturers, since without it it's not possible to determine the bottom line cost of a drug claim. Are you already using contracted rebate data in your analysis?

[image: Relationship of drug claims and rebates] https://raw.githubusercontent.com/demand-driven-open-data/ddod-intake/master/_images/pharma_claims_rebates.png Source http://www.dol.gov/ebsa/pdf/acdanzon061914.pdf

— You are receiving this because you were mentioned. Reply to this email directly or view it on GitHub https://github.com/demand-driven-open-data/ddod-intake/issues/26#issuecomment-210042454

dportnoy commented 8 years ago

@FlaviuSim, I'm not yet sure if this data is accessible anywhere. I'm just doing preliminary investigation since somebody was asking me about it. But as I begin to investigate, I'd like to get a sense for how important such data would be to your work. Or your thoughts about the contexts in which it's most valuable.

FlaviuSim commented 8 years ago

Yes, David, it would be very important to make pricing more transparent for our customers and the entire industry.

Flaviu Simihaian

Co-Founder and CEO, iMedicare https://imedicare.com/#/

Phone: (800) 817-6526 x100

On Thu, Apr 14, 2016 at 1:59 PM, David X Portnoy notifications@github.com wrote:

@FlaviuSim https://github.com/FlaviuSim, I'm not yet sure if this data is accessible anywhere. I'm just doing preliminary investigation since somebody was asking me about it. But as I begin to investigate, I'd like to get a sense for how important such data would be to your work. Or your thoughts about the contexts in which it's most valuable.

— You are receiving this because you were mentioned. Reply to this email directly or view it on GitHub https://github.com/demand-driven-open-data/ddod-intake/issues/26#issuecomment-210078044

dportnoy commented 8 years ago

It's been brought to my attention that there's another potential source for drug claims that might be relevant in some use cases: CMS Integrated Data Repository (IDR)

According to the description it's supposed to be a "highly integrated data environment for the enterprise", with one of the goals being

Transition from a claim-centric orientation to a multi-view orientation that includes Beneficiaries, Providers, Health Plans, Claims, Drug Data, Clinical Data and other data as needed.

We're in the process of finding out about access to it, pricing and its program owners