Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Project Haves and Needs

Discussion in 'Create A 'PatientsLikeUs' ME/CFS Treatment Program' started by Cort, Apr 28, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Project Haves

    • The experience in the Community to produce the appropriate symptom set, test results, community profile variables
    • Expertise on advising and managing the programming end of the project - Jerry (xLynx) has agreed to oversee the programmer (programmer) working on the project
    • A place to display the project as it is being built - programmer will provide or PR website should suffice

    Project Needs and Desires -

    • Manage Suggestions - a way to or someone to manage and organize suggestions
    • Project Manager - ie someone skilled at project management to identify the steps/resources needed to push the project along - and then to push it along! I will be the defacto project manager until, if and when the time comes, someone with experience in that field comes along - and we can work together
    • Programmer - the right programmer for us
    • Statisticians - to help derive formulas that can analyse aggregates of data to discern patterns (patterns recognition)
    • People with Health Industry Experience - to oversee that the right kind of data is being inputted, possibly provide contacts within the industry for an advisoral roles, to help create a project that has value in the health industry
    • Professional ME/CFS researchers/physicians - to provide advice on how to create a useful project, be advisors to the project
    • Project Management Tool - VBulletin has (or had) a project management tool you can incorporate into the Forums. There must be others (that are free?) out there. A PM tool might be helpful?
    • A Fundraiser at some point. I can provide a substantial monetary boost to the project in its early stages but later stages will require a fundraiser
    • ???
  2. OverTheHills

    OverTheHills Senior Member

    New Zealand
    Project Haves

    Everything I say in this post will be from the perspective of a very experienced but very sick project manager. My project management experience is from working in large conservative organisations (banks, oil co's, insurers) with many many thousands of customers, complex products and existing processes. A very different environment. I do not have experience of web-based or prototyping projects, nor a 'customer base' which is web based, inclined to have their own views, sick and therefore restricted etc. SO question any opinion I forward, take it with a large pinch of salt , or throw it away.

    One more 'Have'.
    You, Cort are the project sponsor, probably the most important role on the project.

    It is up to you to define what the problem we're trying to solve is - very specifically & to become clear on how the proposed solution solves the problem.

    This role continues throughout the project: you release the funding, you check regularly that the solution is still going to provide what's needed, as there will be smart ideas that people want to incorporate and budget/time/technical pressures to cut out or slow down development of other features.

    You are also ideally placed to involve and inform the 'user community' so that the finished product is not rejected as irrelevant, too hard to use, etc etc. I would expect the project manager to oversee testing and the technical side of launch while you cover the communication side of things. Its not a role you undertake by yourself - the project manager, technical and science advisors will help.

    A particular danger is that (after some brainstorming/seeing prototypes etc) you may think you are clearer about what you are aiming to deliver than you really are. I recommend writing it down formally and getting some people to review it. Then you can be clear about software requirements, priorities, risks. And you will have something to check back on when people come up with ideas for changes - but you are already thinking about that because you recognise the need for someone to manage suggestions.

    You are correct to think you need a project manager as well - for many reasons - you need to keep perspective and focus on what is being delivered, why (things can change) and its quality not so much on when, how and for how much.

    Not having a project plan would be a recipe for non-delivery, but project management tools for a 4 month (am I imagining that timescale?) can be very straightforward - they are not make or break. Excel at a pinch, microsoft project, whatever the PM is familiar with and cheap. I cannot volunteer to be the PM as I am too sick and would only be letting you down if I even held together long enough to produce a plan.

    Another thing to add to your list of needs is a risk analysis, but I will post more on the needs another time. Unless this makes no sense at all in which case let me know!

  3. JT1024

    JT1024 Senior Member

    Just a quick thought... brain is not functioning too well...

    What about "volunteering" to augment functionality already in existence at PLM when the PR community is able?

    PR already has a great forum but everyone has limited ability/energy. Working WITH PLM to improve functionality beyond PLM AND PR may be an option.

    Just a thought....
  4. OverTheHills

    OverTheHills Senior Member

    New Zealand
    Preparing to make a Project Plan - Some plain english questions

    Not in any particular order. Often a good idea to make a stab and then revisit later as you know more. My intention here is to provide food for thought, the act of writing down and discussing the answers to these sorts of questions will make it clearer where gaps in your thinking are.

    1. 1.Please define the opportunity being addressed (eg - capture,store and analyse ME/CFS patient and treatment information so that......) Perfectly acceptable to define the project as several phases but be clear about what is being delivered in each phase, and beware that plans for later phases may produce very onerous requirements on phase I.

      2. define the relationship to previous work (eg symptoms/xmrv questionnaire) if any

      3. Why are you doing this - eg So that patientshave better/more specific information when selecting treatments, to aid researchers - drug or ME, to identify ME/CFS subsets. Answers for this will influence the type and robustness of data being stored and the processes for data capture. Answering 'all of the above' may produce somethign that satisfies no-one and is very hard to use.

      4.Scope: what does the project include (what will be produced - both end-products and transient products such as a test plan or project plan). What is not in scope - what will you not do/produce that people might assume you are going to produce?

      Some examples:
      Project plan phase I
      Outline project plans for phases 2 & 3
      Software requirements
      software development contract or purchase contract
      Software test plan
      Tested software
      Prototype &/or beta-test software
      Implemented (live software)
      software documentation
      Data definition
      Reporting requirements definition
      Phase I reports prototype
      Phase I reports implemented
      Phase I database
      Trained admin people
      Briefed test people
      Progress reports
      project communications

      4(b) Approach - which things are you buying and which are you building, which things are outsourced

      5. Project schedule (summarised appropriately)

      6. Quality & acceptance - how will you know when you have finished and produced the right things of the right quality.YOu might have a general description and then be more specific for selected products in your scope

      7.When things change in the middle of the project, how will you manage that?Eg the programmers are overrunning and you need to decide whether to reduce what is delivered in phase 1 or let it go on longer. Or someone has a great suggestion. How do you decide or who decides whether to incorporate it in phase I?

      8.Project Roles & reponsibilities its best to be formal and write down who's doing what

      9.Resources - software, programmers, storage, & Costs. Remember to include some contingency.How confident are you in your estimates and why?

      10.Constraints and Assumptions what if anything do you need to work around (eg a holiday or a software compatibility constraint). What things (if any) are we depending on that we think are OK?eg we are sticking with vbulletin for the forums

      11.WHat are the key risks, things that might adversely affect the project, and how are you going to manage them. And what are the key issues things that are currently adversely affecting the project already. AN example of a risk: members of the project team who have ME/CFS may relapse and this will affect productivity. Will you have back-ups in place for everyone? Will you let things slip? what if it was Jerry or the PM so devleopment would not be supervised or the whole project out of control?
  5. cfs since 1998

    cfs since 1998

    Trac and Redmine are both free software project/ and bug/task management tools. Trac is popular but Redmine is the new kid on the block and looks like it might be better.
  6. Cort

    Cort Phoenix Rising Founder

    Its great to get ideas from someone with experience in this area.. I look forward to learning more about project management and the most efficient way to deliver the goods.
  7. Cort

    Cort Phoenix Rising Founder

    A Blueprint! Perfect - just what I was hoping for. Thanks :)
  8. Cort

    Cort Phoenix Rising Founder

    Thanks CFS I'll check them out.
  9. Cort

    Cort Phoenix Rising Founder

    • Phase I: A Treatment Review/Community Profiling Project
    • Phase II: An Individual Longitudinal Treatment Analysis Program - individuals track their progress and protocols and treatments over time.
    • Phase III: A Subset Analysis Project - phase III requires proper data entry in phase

    • Patients can more easily identify treatments which work for them, cost effective treatments, treatments with high side effects, duration needed for treatments to work, optimal dosing, side effects expected,
    • Physicians can more easily determine effective treatments for their patients
    • Drug companies can get effectiveness information on drugs used by a large segment of the population - which they lack at present. This could spark interest in the disorder.
    • Validated treatment effectiveness information highlights known the effectiveness of known behavioral treatments for ME/CFS - helping remove that stigma.
    • Subsets - Patients, researchers, physicians can get preliminary ideas on subsets, highlight hidden disorders, give patients new treatment avenues, highlight new drug options, bring clarity to a vaguely diagnosed disorder.
    • Physicians - patients can receive information on physician effectiveness.
    • Ongoing treatment assessment program provides patients the ability to track their effectiveness on treatments, protocols. Treatment modules provide patients with information on treatment protocols commonly used in CFS and the ability to track their effectiveness.

    Answers for this will influence the type and robustness of data being stored and the processes for data capture. Answering 'all of the above' may produce something that satisfies no-one and is very hard to use.
  10. Otis

    Otis Señor Mumbler

    Great post OTH. You've done this before. :)

    Many project fail in the absence of this kind of planning.
  11. OverTheHills

    OverTheHills Senior Member

    New Zealand
    @Otis. Thankyou kind sir (mwa) :angel:

    @Cort... how is the planning going?time to write more stuff down or is everything still swirling?

  12. Sing

    Sing Senior Member

    New England
    I'm out of my league in terms of contributing expertise to this proposed project; however, I am wondering if it might better be done later on when we have more data from the XMRV research? This research may change the field of understanding considerably and might it not make some aspects of this proposed project obsolete? I wonder if it would be helpful to confer with Dr. Mikovits or Bateman or the CFA, etc. to see what they would say about coordinating this project with the new research? Because I can also see the project furthering the direction of research if it is timed and coordinated well.

  13. Cort

    Cort Phoenix Rising Founder

    We're with you on this Sing. I talked to for researchers in three of them have expressed considerable interest. They all believe we can collect data that researchers can use. Dr. Vernon and Dr. Jason and Dr. Hart's provided questionnaires we are going to merge together to build the patient data repository. I think we'll try and collect more data than they suggest - we'll need patient suggestions for that.

    Jade in Australia is working away on a data model for the key parts of the website. I am trying to figure out how this *&*(&ing Wiki works; once I do that I'll start posting sections upon that people can give their opinion on what should be in the data repository.

    With Regards to XM RV the only thing I can think that would have a strong impact on the project would be if XM RV is shown to create a distinct kind of CFS and I think that will time and if that happens we'll have the ability to split it off. In fact that's a key part of the website - we nonsense want to be able to find subsets.

    I haven't talked to Dr. Mikovit's or Annette or any physicians really. I've really thought that the WPI is probably too busy now but I plan to try and get in touch with them and Dr. Bateman, Dr. Klimas and ???? and try and get their input when things are further along.
  14. Sing

    Sing Senior Member

    New England
    That is terrific, Cort! This could be a hugely meaningful addition to the research effort, one that only a patient group like ours can contribute.

  15. Cort

    Cort Phoenix Rising Founder

    We've got the data! Lets put it to some use.
  16. Leopardtail

    Leopardtail Senior Member

    In a project of this scale, two things are essential.
    The first is true project scheduling software, in order to keep track of inter-related requirements, neither expensive nor hard to find.
    The other is requirements capture, its harder than it first seems.
    You need an Analyst Designer distinct form your programmer, different skills set and projects run better when different people do each. Also programmers are cheaper and more of their time is needed, hence there is cost advantage.

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