Proposal: Create a Comprehensive Treatment Review Program

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To gerwyn, I agree with you to an extent as to one causative agent, but suppose that single causative agent had various forms.
designed for diferent purposes or tuned to diferent speices, which is how I view it, results would be a core of similar symptoms clearly recognizable. But and a big but, you would also have those with specific accents. Such as those who are photosensitive and those that are not, by photosensitive I mean upon their eyes, not the skin reaction, which is already evident.
A more positive first step might be to use this site, asking the members to post or advise of any treatments, supplements or therapies, they feel should be warned of to others.
 

Leopardtail

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This thread contains background information and my ideas about this project. I'm trying to gauge interest and get suggestions.

(The topics embedded in this page are being split into different threads for discussion.)

Background - I first thought of creating a comprehensive treatment assessment program on the Phoenix Rising website about a year and a half ago.

My ideas about the project have grown over time (quite a bit :Retro redface:). It would have several purposes/possibilities.

  1. to come up with a way for patients to easily find treatments that are more likely to work for her/him by giving them the capability to identify similar patients to them and learning what is not working and what is working for them
  2. to gather useful information on treatment options that could be transmitted to drug companies, doctors, etc. that will help them refine their treatment approach to ME/CFS; this is apparently what PatientsLikeME is doing.
  3. Tease out different types of ME/CFS patients and compare them using a variety of factors (ie onset, duration, test results, treatment effectiveness, etc. ie - attempt to find the subsets
  4. Provide a comprehensive profile of the ME/CFS Community

To that end I've spent a great deal of time over the past year and a half trying to learn computer programming. It’s become clear to me that it would take me a great deal of time to get up to snuff enough to produce this kind of program. With some dollars adding up from donations I embarked a couple of months ago on an exploration of how expensive it would be to create such a site. At one point I learned a similar program had already been created.

PatientsLikeMe - I learned about the PatientsLikeME site about nine months ago. PatientsLikeMe is very innovative, forward thinking treatment review site that has the nice benefit of apparently being run by very good people.

PLM allows patients FM patients, for instance, quickly how effective a drug, say lyrica, is at reducing pain in the FM community at large. It allows them to see what side effects patients generally experience, what dosages work the best. You can punch in a symptom - say migraine - and get a list of treatments used to battle that. Click on a treatment and you get the information I mentioned above - what people use it for and how effective it is. Then you can click on a patient who's using it and see what their comments on it are and what side effects, etc they personally experienced. Finally you can follow that patient over time and see how they do on the drug.

http://www.patientslikeme.com/treatments/show/2421-duloxetine

The site is clearly a huge step up in the treatment review field and will, I would think, redefine how treatments are assessed in the medical field, vastly increase the medical community's understanding of which types of treatments are effective for which types of patients and basically be a huge boost for patients everywhere. It’s a great site! One way or another the CFS community should take advantage of this type of site.

PatientsLikeMe added chronic fatigue syndrome to its Fibromyalgia section in the past year. They are subsumed within a sea of FM patients and in a section that was built specifically for fibromyalgia. While the initial symptom base doesn't look all that much like CFS it is possible for CFS patients to make it more CFS-like by adding symptoms to the list. Still, to some extent, CFS patients are bit of a round peg trying to fit into a square hole. There’s no denying, though, that this site has immense possibilities why for CFS patients as it is now.

Building a PatientsLikeMe (Plus) Site Of Our Own

There are good reasons to stick with PatientsLikeMe - it’s an excellent site that provides many opportunities, the owners appear to be adding capability fairly frequently, they have substantial financial backing, etc….and they may be able to do some things that would be difficult for us to do .

Doing What They Do Differently - After looking at PatientsLikeMe - there is also the opportunity to take what works and what doesn't work as well and improve on it. My conception of the site goes well beyond what PLM is trying to in several areas.

Add Test Results - Adding tests results (for those people willing to list them) is a particularly potent need in chronic fatigue syndrome because, unlike some of the diseases on that site, so many people have different test results. Imagine scanning a program for people with the same test results that you have and seeing what treatments are working for them.

Image being able to bring up a type of test result (failure on a tilt table test) and then describing the types of patient that display this. How are they different from other patients? Do they have a typical pattern of other abnormal test results? treatments work for them?
  • the query would go something like this= gather all patients with positive tilt test results then create a list in descending order of frequency - of test abnormalities, typical symptoms, type of onset, gender, duration of illness, activity levels, treatment effectiveness…….
  • Then do the same with the community at large- show a typical CFS patient right next to them.

(Yes, there are security issues with test results but we could hide individual information test result information and present test result information as an aggregate; ie people with X set of test results tried these treatments and achieved this success or failure with them -).

CFS Itself Needs to Be Characterized Better/Subsets need to be revealed - PLM does not attempt to characterize some important community variables or to pluck out Subsets - CFS, as we all know is a very complex disorder, possibly with many subsets. Creating a site specifically attuned to CFS could help us better understand that aspect of it.

PLM asks what kinds of treatment work for people with fatigue in CFS. We would ask that as well but we could also characterize ME/CFS as well: We could ask simple questions such as if type of onset effects the disease progression at all? How about Illness duration? How are people who’ve had this disease 5 years different from people who’ve had it 20 years. Dr. Maes says rates of IBS increase - do they? I’ll bet rates of MCS and FM increase. Do they? All these questions are answerable if you have a good enough database.

Examples - Gender - a very simple example, create a table or pictorial representation examining the effects of gender: males vs female on various factors . (Unfortunately I can't drop my table on here. Imagine it as a table.

Two columns with the stats underneath Male l Female
  • Average age
  • Average duration of illness
  • Average activity level
  • Type of Onset %acute w/out warning, %acute w/ previous reduced health, %gradual %acute w/out warning, %acute w/ previous reduced health, %gradual
  • Symptom presentation Pie chart showing relative proportions of immune/nervous system, etc symptoms (CCC)?
  • Or a list of most common symptoms reported
  • Co-occurring Conditions
  • ?????

You can do the same thing with many factors.

Digging Deeper - This is just the beginning of how it's possible to characterize this community. For example when we query all people with HHV6 Infection - we get a page that contains pie charts or other visual aids of.....
  • %acute/gradual onset, average activity level, illness duration, %male/female and charts indicating most common symptoms, most common other positive test results, treatments tried, -----to be determined
Then we compare them to the ‘typical’ CFS patient - same variables aggregated over the entire community - an easy to understand picture of this type of patient and how they differ from others

[

Characterize the ME/CFS Community while we’re at it- why not go whole hog and provide a snapshot of the ME/CFS Community while we’re at it. Much of the information we gather is not available.

• Work status (part-time, full time, not working)
• Date last worked for pay (average)
• Education Level
• Disability/Social Services utilized (% using government disability, private disability, other government support???)
• Finances - % government disability /private disability support/family support/no outside support
• My health over the past year has…improved, gotten worse, etc.
• Since I came down with CFS my health has……..
• Common co-occurring diagnoses

Medical community satisfaction

• Type of physician/physicians seen
• Satisfaction with current physician
• health practitioner level of expertise in ME/CFS
• I am not seeing a physician because (finances prevent, no suitable physicians available, tired of wasting my money))

The Phoenix Rising Forums - we would also be able to integrate the Forum package, with all its capabilities, into the site.

Physicians - We could also include a Physician variable which allow patients to access patients by Physician - thus allowing patients to examine how a broad swath of patients under Dr. Cheney’s, Dr. Peterson’s, etc care are doing.


I’m basically committed to doing this project. Jerry (xlynx), a forum member and software developer, has agreed to oversee it on the technical end. He believes it would not be difficult to meet PatientsLikeMe’s capabilities and encourages us to find ways to surpass PatientsLikeMe (PLM) in its application in CFS. In short he thinks we should ‘think big’.

Costs:

I’ve presented a First Stage of the site like PLM to several programmers based in India, one in the US and to Jerry. Stage I would include virtually everything you see on the PatientsLikeMe Site minus the ability to track treatments over time (Stage II) and not including my potential additions. These were preliminary forays to get a sense of how much something like this would cost.

The bids to create a site like this, thus far, have ranged from 5-6k (India), 6-10k (US) and we’re waiting on another bid from India. Jerry believes a single programmer working for three or four months at somewhere around $1800 a month could produce this site. I rather suspect they are on the low end. I can kick it off with perhaps a quarter of the total needed for the low-end estimate.
I have seen a few comments on the subject of Test results, one obvious thing needed is (for each Lab) an indication of average results and preferable quintile population distributions. We would then have a better idea what those results meant in 'real terms' and allow them to be better compared. Another option would be 'optimal range' two sub-optimal ranges, and two seriously deviant ranges. Once this data has been offered once per lab, it should not be necessary for each PWC to repeat it.

With respect to the development - I formerly built very large interactive websites involving data-analysis. The key thing to start with is not 'what you see on screen' but what data you ultimately want to have, and what you want to do with it. A key failure I identified in new clients was that the 'previous version' had not paid enough attention to the design and storage of hard data. This can easily mean that need to 'throw away' old data when improvements are made.
If that initial phase is done correctly the overall cost of the project will drop significantly, if done wrong, it will rocket. Well designed systems cost more at first production but require less time and less skill to maintain and improve.

I would estimate that a developer of the right calibre to lead this project would cost more than four times what you estimate per month. Creating a durable and robust system of this type is MUCH harder than creating a system that 'works for now'. Programming practice in the last two decades has also made the level of skill needed in the planning stage much more rare.
 

Leopardtail

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Security

Regarding security concerns:

1) Patient Access Free - Access can be locked down so only patients can view patient data

2) Access for a Fee - Access by researchers, drug companies, doctors, etc can be made available as defined by PR. For example, a report exported to a file could be provided for a fee. More extensive access could be made available based upon a fee structure to be determined.

3) Unique Patient Identifiers - By assigning a unique patient identifier to each patient entering data, data made available to non-patients would decrease the risk of exposing patient identifiable information to non-patient groups. This functionality is already used extensively in industry. Most healthcare organizations utilize a Master Person Index (MPI) in order to link data from disparate sources to one person.

More ideas to come and much to be fleshed out!

Cort, tracking all these thoughts and ideas is a lot of work. If I didn't need to work full time, I would love to help. There are a lot of great writers on this forum and I bet more than a few have experience writing grants or proposals.

Love this idea! ~ JT
I agree in principle with much of this. It also occurred to me that making summary data accessible would be a massive research opportunity. With respect to charging for access - for me a lot depends on who wants the access. Drug companies that will profit from the access are one thing and they probably should pay for the data. Most research projects in academic institutions however are another issue, they typically have trouble getting funds and we do not wish to stifle research. We also need to consider that many unemployed and disabled PWCs do research 'for the good of all'.

I have been involved in the design and planning of a medical information system and yes using a numeric ID is a good start. Access to a particular record rather than summary information however even using and ID can create legal issues in lots of countries, so care is needed there.
 

Leopardtail

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I think this is a noble, understandable and note worthy approach and I commend your idea. However, I feel restrictions by the AMA, will prevent progress with such a project unless it is done in a clinical setting. There is potential for lawsuits to hold this project up, due to various licenses needed to pursue such a project; if not done within legal parameters. I believe (my opinion only) that Licensed Physicians, Scientists and Researchers need to be implementing these future systems you mention; and I believe these will definitely be instituted through medical and political reform in the near future. For now, I believe our time, energy and donations should go towards advocacy, research and outreach programs to help those who are actively coping with symptoms. As far as the program you mention/outline, there are patient privacy rights to be considered plus a greater understanding of biological and medical training needs to be understood that can only be obtained through intensive education and practice which is essential to gain perspective on this and all diseases. Becoming a board certified physician and specialist takes every ounce and energy and time of a 10+ year process, if not a lifetime of understanding. To skip this educational process in order to set up a medical research project, the understandings and needs of the biological processes at hand needed for such a project involving patient procedures would lack imperative substance. I feel Pheonix Rising has created an incredible network for disseminating information, for sharing opinions and viewpoints and for getting information circulated about Fibro/ME/CFS/CFIDS. THis accomplishment alone is an incredible gift and has furthered advocacy for our disease. I believe that the more we unite as a group through our available web site forums, the more shifts and progress that will be made towards progress for our disease. Cort, you have made an invaluable contribution through this site and I am very grateful for your work, this site and the information provided. Getting back to your ideas....It may be that a committee will be formed at some point through one of the newly formed institutes and that your ideas and plans will be put into place by physicians, researchers and scientists. I think it is possible that you will be a part of one of these teams which will put into place new systems, etc.....
Julia, Cort,

you are right to be cautious, I made a post about this. It is however possible to work around legislation if you are careful what data you report and are equally careful about consent. Personally I think the value to patients themselves is just as high, knowing for example which symptom clusters most benefit from which treatment.

We need also to be careful since quite a few people on this site have clearly defined and distinct medical conditions that are not true ME, but other diseases. If data is coming from patients, how will we achieve diagnostic clarity? This might well take a somewhat complex multi-part questionnaire to filter out the various type of fatigue illness on here. The same for people with genuine ME (symptom clusters and developmental clusters as indicated earlier by Cort).

Perhaps a simpler first project (possible using the site as it stands) might be discussion about those symptom clusters and diagostic groups?
 

Leopardtail

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a

I understand your concerns Julie but a similar system has been functioning at PatientsLikeMe for several years now and its proved very successful at illuminating successful (and not successful) treatment options for different diseases. A system like this, of course, will never be as rigorous as a scientific study but it has the potential to provide more information much more quickly to patients. Even in well researched diseases treatment trials often consist of limited numbers of patients that are hardly representative of the entire patient community. Of course in a disease like ME/CFS where treatment trials are rare and patients are using an enormous number of different treatments getting a handle on treatment efficacy is critical. PatientsLikeMe was basically born, so far as I can tell, out of frustration at a slow-moving medical that proved unable to provide timely and nuanced information on treatment options.

It is a large task but so long as we consider it carefully, get input from qualified people on the technical and health industry end, I think its doable and really needed and we're going through the process of determining what is feasible and what is not. Thanks
I am all of: a PWC of many decades; a very skilled software analyst and (more recently) involved in research. I may well be able to assist with this (within reason time wise).
 

Leopardtail

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Here's an idea for a smaller project, or even the beginnings of a small part of the larger project.

First, look at this page: http://www.lassesen.com/cfids/protocols.htm

This is an attempt to quantify the success of a given protocol based on patient reports. I don't know if I ever mentioned this before.

Here is what I just posted to the Experimental Group. It could happen here or there or both places.



Thoughts?
How much do you know about formal relational database design (e.g. 5th normal form) and so on Andrew?
 

Mark

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What's the status of this? Any progress? This sounds fascinating. <3

-J
Hi @JaimeS. Sadly this project is on hold at the moment because we don't really have enough volunteers to cover our core services let alone take on project work. But it's a project that's very close to my own heart, so if a very committed individual or a small group of members would like to revive this project and try to push it forward (even if only a little bit) I'd be delighted to point you at all the existing resources and suggest some next steps...if you'd like to get this moving (or help out with anything else) just start a conversation with me.