CPAP software community proposal

[rada]

I am requesting feedback on an idea for a proposal. The broad theme is that home health, patient empowerment, and the web can be combined with open source software and shared data depositories in a synergistic way. One subtheme is that patients can support the collection of data and the development of tools to analyze that data so as to help them treat their own disease and contribute to the body of medical knowledge about the disease. CPAPTALK.com already does a marvelous job at achieving patient empowerment through the web for home health. I am asking about adding a software-related feature.
In the course of trying to deal with my obstructive sleep apnea, I have collected daily for the past two months my ResScan data, my webcam data, my pulse-oximeter data, my annotations about other relevant events, such as mask-type being worn, and have provided daily interpretations of what seems to have caused what and how I should respond differently the next night. I would be happy to share this data, although I expect others are not interested in the detail. However, I do suspect that some might want further tools for handling their data. I want more tools to analyze my data and to help me find relevant relationships in the data. The task is too big for me alone. Could some of us share the effort?
Allow me to illustrate a small part of the task based on my personal current problems. For CMS50E csv files, I can write little Excel programs to help collect trending data from those files, see for example my trivial example in another post. However, what I want to do is semi-automatically link the patterns in the pulse-oximeter data with the patterns in my APAP data. I can manually encode the charts from ResScan into annotations as to the times of clusters of apneas or hyponeas and could write software to relate those patterns to the pulse-oximeter data, but a better approach would seem to be to parse the ResScan rlk files and work on those. However, I don't know how to parse the rlk files and would like to work on that. Someone with a Respironics machine will have data in a different format. Given that we could access some raw, time-series data from some of the vendor products, we could write translation software that could take this data into some agreed formats for further processing with our software that tried to correlate patterns. An example of correlating patterns is to relate changes in SpO2 or pulse to changes in air flow. For my webcam data, I have my own personal coding scheme that I then manually relate to the ResScan and CMS50E data (see for example a sample table relating position and other values), but that coding and relating is extremely time consuming and could be semi-automated.
What do you think?
Roy

[dave21]

However, I do suspect that some might want further tools for handling their data. I want more tools to analyze my data and to help me find relevant relationships in the data. The task is too big for me alone. Could some of us share the effort?

Hi Rada, I'm in the same boat too, the more tools I have to analyse the more I feel in control. I'm happy to lend a hand where possible, I'm not a developer, I don't write code but I do a lot of Excel macro work if that helps.

However, what I want to do is semi-automatically link the patterns in the pulse-oximeter data with the patterns in my APAP data. I can manually encode the charts from ResScan into annotations as to the times of clusters of apneas or hyponeas and could write software to relate those patterns to the pulse-oximeter data, but a better approach would seem to be to parse the ResScan rlk files and work on those.

I think this would be great, currently I do have a pulse-oximeter but not one that records data. I'm already thinking about purchasing one that does, ideally even better to have it linked to the S9 but I doubt I'll get one that will. I think a lot of people will be in the same boat and if it's possible to somehow link to separate databases of data together to provide better stats then I think this would be a great idea. Not everyone would be willing to partake, probably most wouldn't as it might be too technical but I like the general idea of improving the tools for the masses and allowing more people to link data together.

The other thing I have been thinking about is it would be good (like this forum) to be in a position to collect data from people willing to submit it on a daily basis and combine it into a single database. That's beyond me and what I can do, but I think ultimately over time that would be a really good thing for health care professionals to be able to see our data. I don't work for ResMed or any health care company or profession, but I do work with computers every day and the more data I have for my own personal situation the better I feel as a patient.

[rada]

Hi Dave21,
Thank you for the feedback. I also had a personal message from someone (who shall go nameless unless the person decides to post publically), and I will add here that made-anonymous dialog:
"I like the concept but not sure how many on the board can really help with such a project.
I for one know nothing about writing code
But I can help market it maybe... "
To that message, I replied (now revised to reflect new information) in this way:
"Such a project would require substantial management, marketing, and research effort that a team of diverse people could pursue. In fact I sent email to ResMed about the idea shortly after receiving your message and sent email to colleagues at Johns Hopkins Medical School about the idea earlier this week -- both those emails being in the marketing realm. The project could benefit from funding and one kind of marketing would be to pursue funding -- I mean from governments or philanthropic organizations to a non-profit entity. Another kind of marketing would be to identify collaborators or to identify people who might benefit and what they would want in order that they most benefit. What were you thinking that you might be willing to do vis-a-vis marketing?"
What I'm going to do next is to write a new node as part of this thread but titled "CPAP Patient Standards Community Proposal". That will incorporate the preceding proposal but emphasize patients (us) describing what kind of data and tools we want.
Yours,
Roy Rada

[rada]

Claim: Patients can support the collection of data and the development of tools to analyze that data so as to help them treat their own disease and contribute to the body of knowledge about the disease.
Problem: Data from a CPAP-related medical device is often only available in highly-digested form leaving little opportunity for the patient to 1) further analyze that patient's raw data or 2) systematically relate that data to data from other sources. For instance, a patient might have a ResMed CPAP machine and a CMS50E pulse-oximeter and want to semi-automatically correlate the SpO2 with the apneic events but not be able to access the ResMed data in a digital form to support such a correlation.
Method to partially solve this problem: A web-enabled discussion forum of some non-profit, relevant entity might be extended so as to support patients, vendors, and health care professionals in developing standards and other tools to address the problem. One view of this virtual organization reflects the traditional product life cycle of requirements, design, implement, and test. In other words: 1) what do people need as regards effective, patient-maintained sleep apnea treatment, 2) how can that be further specified, 3) develop a prototype to demonstrate this better tool or data, and 4) test whether this prototype helps patients. Another view emphasizes standardization and might be seen from the cycle of collecting existing documentation on tools and data, proposing harmonization and updating of that documentation, debating the pros-and-cons of any changes, agreeing on a new standard, publicizing this standard, and seeking compliance with the standard. For instance, the medical profession has an agreed definition of what apnea means that depends on air flow and oxygen saturation; however, patients often have only air flow data and a definition agreed across all parties as to what apnea means when only air flow data is available might be helpful.
Next Steps: Next steps might include improving this proposal, documenting what has already been done to solve this problem, and developing a team of people who are willing to work together across the multitude of tasks and disciplines.

[dtsm]

Hi Dave21,
Thank you for the feedback. I also had a personal message from someone (who shall go nameless unless the person decides to post publically), and I will add here that made-anonymous dialog:
[/b]"I like the concept but not sure how many on the board can really help with such a project.
I for one know nothing about writing code
But I can help market it maybe... "[/b]
Roy Rada

I am out of the closet

[BlackSpinner]

Actually a bunch of us programming types tried to get together via a forum on yahoo but there are problems.
Each manufacturer has their own proprietary way of encoding and storing the data first of all. No specs available.
Then we ran into the problem of how to provide the service - via web (security issues) or downloadable program (operating system issues) But mostly it was the first problem - we have to be able to read and interpret the data in order to display it. After that it is a piece of cake.

[bearded_two]

The data from Respironics and ResMed CPAPs is encrypted. This means that somebody will either have to try to figure out how to break the encryption (which may not be all that difficult) or be limited to whatever data the manufacturer's software provides. Basing a program on breaking CPAP data encryption would not be taken lightly by the CPAP manufacturers and would probably start a process that begins with strongly worded letters from lawyers.

[letchworth]

combined with open source software and shared data depositories in a synergistic way.

You had my interest at that point, to be sure. If I understand correctly, that could mean replacing expensive single-purpose software (of limited value) with software that not only meets the needs of the individual in a patient-focused approach where the tools might all work together; and allowing, at the same time, the community to have (with the permission/participation of the user) a broad-scope data which might provide insights into the relative effectiveness of individual pieces of equipment (masks, xPAP, and diagnostic tools like oxymeters, etc.

I can see where such a data base could be useful to equipment designers and the medical community at large, and could have ancillary benefits of standardizing customer demand for data-capable equipment while heightening patient/user awareness and treatment participation.

Like so many, my enthusiasm surpasses my computer skills- however, I am experienced in the areas of seeing a new situation from the viewpoint of the newcomer (a skill which might well translate into tutorial/educational documentation) and distribution.

I think this idea has the potential of advancing treatment possibilities, and is a huge job well worth considering.
letchworth

[BlackSpinner]

The data from Respironics and ResMed CPAPs is encrypted. This means that somebody will either have to try to figure out how to break the encryption (which may not be all that difficult) or be limited to whatever data the manufacturer's software provides. Basing a program on breaking CPAP data encryption would not be taken lightly by the CPAP manufacturers and would probably start a process that begins with strongly worded letters from lawyers.

Yep that is the biggest issue. And it will be a hot day in Niflheimr before they will share that info publicly. Especially considering most manufacturers do not consider patients their clients. They are in business to sell to DME's who don't want to let patients to have this information as long as they can make a buck of them. They don't get any money from us so they will not listen to us.

[rada]

Dear bearded_two and blackspinner,
Wow -- the knowledge of people here helps me enormously. I did not know that Durable Medical Equipment Manufacturers (DME-Ms) were encrypting their data files. If the purpose is to hide a patient’s raw data from that patient, then I could understand the conflict between our purpose and that of the DME-M. On the other hand, DME-Ms depend on our support in the end. As Blackspinner and others have noted elsewhere, the American healthcare system is peculiar in that health insurance companies pay health care providers with money from premiums, mainly from employers, and the patient is historically seen as a commodity. Nevertheless, I believe we have leverage and that for this community, at least, that the DME-Ms ultimately depend on us. Should I approach a DME-M on our behalf and ask for permission to decrypt our data? I believe a positive, win-win, working relationship can exist between DME-Ms and us.
The health care industry is the second largest part of the US economy, second only to retail, and its complexity merits some refinement of terminology about DME. Usually we refer to DME to mean the Durable Medical Equipment itself. The manufacturers of that equipment, I referred to as DME-M. Those who sell the equipment to patients might be called DME suppliers or vendors. Those suppliers generate a claim to a health insurance company and are thus covered under HIPAA.
Bearded_two mentioned the possibility of a harsh letter from the DME’s lawyer. As regards legal issues, the biggest American healthcare information law of the past two decades is HIPAA’s Administrative Simplification, and my interpretation of one of the key points of that legislation and its resultant regulation is that a patient has a right to know the healthcare data about the patient.
Bearded_two, you said: “to figure out how to break the encryption (which may not be all that difficult)” -- might you be able to do it?
By the way, I asked a student of mine to study sleep apnea data and software from http://www.physionet.org which is sponsored by NIH and maintained at MIT. NIH is supporting there for professional medical researchers what I am suggesting we do for patients.
Thanks,
Roy

[BlackSpinner]

Dear bearded_two and blackspinner,
Wow -- the knowledge of people here helps me enormously. I did not know that Durable Medical Equipment manufacturers (DMEs) were encrypting their data files.

Bearded_two mentioned the possibility of a harsh letter from the DME’s lawyer.

The data gets encrypted at the time of recording in your CPAP machine. This is for your personal data security or at least that is their explanation. Also even if it is not encrypted we still have to know what each byte means, a bunch of numbers is useless unless we can tell that the first number is the time, the second is the event code ect.

the American healthcare system is peculiar in that health insurance companies pay health care providers (including DMEs) with money from premiums,

No it is the same everywhere. I pay cash but still had to go through a DME in Canada, same as going to a pharmacy with a drug prescription. You are not the primary customer of a pharmaceutical company either. Neither in many cases are you the primary customer of Kraft foods, the grocery store is. The farmer who chooses to sell at a market will grow different crops then the one who sell to Kraft, he chooses tomatoes that will ship well, the other will choose tomatoes that are tasty and look good. Different customers, different focus.

the biggest American healthcare information law of the past two decades is HIPAA’s Administrative Simplification, and my interpretation of one of the key points of that legislation and its resultant regulation (that applies to DMEs) is that a patient has a right to know the healthcare data about the patient.

And it is available. At a price the DME will provide you with a report. The fact that we consider that not to be good enough and that the data is time sensitive is our problem.

Bearded_two, you said: “to figure out how to break the encryption (which may not be all that difficult)” -- might you be able to do it?

It is illegal and since many of us work as consultants it would negatively impact our careers, never mind our bank balances. This is a variation on internet piracy that the law courts are beginning to really bear down on.

[rada]

Dear Blackspinner,
You said: “data gets encrypted at the time of recording in your CPAP machine”. To my mind encrypting is a special case of encoding, and encoding is a special case of manipulating or processing.
Processing: Our equipment takes air flow data and processes that into apneas and hyponeas with algorithms frequently discussed on this forum and fairly straightforward -- a moving average declines a certain percent. I would rather have the raw data showing the air flows and be able to compute my own apneas and hyponeas but recognize that that might not be possible should my ResMed 8 pass to my computer only the processed apnea and hyponea interpretation without the original air flow data. However, having the apneas and hyponeas as numerical time series would be an advantage over having only the statistical overnight summary and the pictures of graphs that ResScan now offers me. With the numerical time series, computer programs could easily correlate my apnea or hyponea numerical time series with other numerical time series (such as my CMS50E provides for O2 and pulse). The way I have to do that now is to manually encode the visual graph from ResScan into a numeric time series.
Encryption: When I transfer the data from my respirator to my computer, ResScan puts ‘.rlk’ files on my disk. I can copy those ‘.rlk’ files to someone else’s computer running ResScan and that computer will then see my data exactly as my computer sees it. From that we might infer that ResScan decrypts the data each time it accesses it. Is that what you mean?
Markup and Cooperation: Regarding the processed file, yes, we would need to know the markup for the file. A long string of ones and zeroes though decrypted would be very difficult to reverse engineer. From looking at my ‘.rlk’ files with Microsoft Notepad, I can see alphanumeric sequences that are semantically meaningful. Thus, I gather the file is not stored simply as ones and zeroes but has markup that would be relatively easy to reverse engineer should one have decrypted the file. However, I would not like to think that we should have to work uphill constantly. We should ideally be able to develop a relationship with the DMEs such that they share such information with us (although I read you to say that we cannot realistically hope for such a relationship).
Legal Consequences: I would appreciate further input from people as to the legality of 1) my decrypting a data file on my computer and 2) my sharing information with others about how I did that decryption.
Experience: Blackspinner, you clearly have more experience than me with trying to develop a community of CPAP users to help understand our data. I appreciate and respect your experience. Are you suggesting that we surrender the cause? Given that I have not yet invested as much effort as you evidently did and have not yet reached my quota of disappointment, what would you recommend that I try next?
Personal: I gather you live in Montreal, Canada. I have visited a former PhD student of mine Hafedh Mili there several times -- he’s a professor of Computer Science at the University of Quebec at Montreal -- and enjoyed the city and the people very much. I plan to drive with my wife and children this summer to my parents’ vacation cabin in northern Ontario but we won’t make Montreal unfortunately. If you’re ever in the Washington-Baltimore area, you are welcome to visit me. You mention that you are a consultant. What kind of consulting do you do?
Yours,
Roy

[rada]

Europe
I went to an interesting talk last Wednesday titled “Merging Health Literacy with Computer Technology: Self-Managing Diet and Fluid Intake among Adult Hemodialysis Patients”. Afterwards I chatted with a Professor of Medicine at Hopkins. To my recollection he said something to the following effect:

• A group of anesthesiologists at Hopkins are organizing a repository of patient anesthesiology data.

• This data comes typically from DME devices, but they have found that the American representatives of these DMEs refuse to share the keys to unlocking the data.

• However, the anesthesiologists have colleagues in Europe, and the European Union requires DMEs to provide these keys to health care professionals.

• So the Americans are getting the keys from the Europeans.

Is someone on this forum knowledgeable about the opportunity to decrypt our DME patient data files with the support of European representatives of DMEs?

[BlackSpinner]

Dear Blackspinner,
You said: “data gets encrypted at the time of recording in your CPAP machine”. To my mind encrypting is a special case of encoding, and encoding is a special case of manipulating or processing.

Thus, I gather the file is not stored simply as ones and zeroes but has markup that would be relatively easy to reverse engineer should one have decrypted the file.

First of all, encoding, decoding, decryption are all variations on a theme, different manufactures use different schemas. All data on all computers are stored in binary (0 &1's) Note pad just encodes it for you into a readable format. Believe me, when I started programming one had to toggle in binary code bootstraps. I used to read Octal dumps.
Every time a manufacturer develops a new machine you can count on the layout to change.

However, I would not like to think that we should have to work uphill constantly. We should ideally be able to develop a relationship with the DMEs such that they share such information with us

The DME's are not the ones to work with - you need the manufacturers specifications and you need someone to tell your programmer what to do with the information. It is no different from accounting. A set of transactions are meaningless unless you inform me what to do with the debits and credits under what circumstances. Me dumping transactions in a list doesn't help you produce your income taxes.

Legal Consequences: I would appreciate further input from people as to the legality of 1) my decrypting a data file on my computer and 2) my sharing information with others about how I did that decryption.

Hugely complicated arena - we are talking licensing and patent law here. Someone patented "if the date is less then a certain number put a '20' in front of it other wise use '19'" Idiots.
You providing a copy of your file could be construed as breaking your licensing agreement. You bought the software for your personal use only. This is almost the same concept as sharing music or videos or knitting patterns.

I am not sure what to tell you about what next.

Personal: I gather you live in Montreal, Canada. I have visited a former PhD student of mine Hafedh Mili there several times -- he’s a professor of Computer Science at the University of Quebec at Montreal -- and enjoyed the city and the people very much. I plan to drive with my wife and children this summer to my parents’ vacation cabin in northern Ontario but we won’t make Montreal unfortunately. If you’re ever in the Washington-Baltimore area, you are welcome to visit me. You mention that you are a consultant. What kind of consulting do you do?
Yours,
Roy

I write software. Currently I am writing internal web software on contract. I have about 35 years of experience in creating software for various industries like manufacturing, importing, point of sale, order processing, construction, EDI, medical billing and now HR websites. Of course at my age I am now considered un employable and I work on contract.

[rada]

Manufacturer: I agree that the Durable Medical Equipment manufacturer is the one who does the encryption. We typically deal with a Durable Medical Equipment supplier who is the retailer between us and the manufacturer. I was referring in particular to the manufacturers ResMed and Philips Respironics.

Legality: I still do not understand the argument that our trying to interpret our data files directly is a violation of law. I understand that

• my downloading a copyrighted book or video and then sending it to others would be a violation and

• the manufacturer might argue that it is providing only the final screen of information and not any intermediate files.

However, the ResScan software does not come with any of my data on it and through my breathing I generate data that ResScan transforms into an intermediate file that I archive on my computer, as ResMed wants me to do. I could imagine that data file belongs to me and that I have a right to try to understand my data. The situation might be different had ResMed sold me a copyrighted data file and I was now trying to copy it to others.

Alternatives: Based on your insights, I have reason to doubt that we will get specifications of how to read our data files from the manufacturers. If I accept that I am not allowed to look inside my data files for whatever reason, then I still remain interested in my proposed project. The problem we face and the possible benefits of a concerted approach seem to me to remain. Actions that would continue to appeal to me include:

• continue to try to work with the manufacturers,

• work on approaches to semi-automatically translate the visual graphs that are generated by ResScan into numeric form,

• address the standardization of data files.

I am not aware of a standard for those intermediate data files from the manufacturers. We could create some standard. The next issue would be whether or not the manufacturers build to the standard. The manufacturer complies when they have some advantage to comply. For instance, a government can say that government purchases must be of equipment compliant with a standard and that motivates a manufacturer to comply.

Dynamic: You are right that the manufacturers are in a competitive race to improve their products and formats of data files will change. More generally, the diagnosis and treatment of sleep apnea is changing, and we continually adapt to these changes.
Thank you,
Roy