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Thread: An alternate approach towards a cure

  1. #1

    An alternate approach towards a cure

    When looking at the approach being used for developing a treatment / cure for any affliction, not just SCI, there seems to be a less than optimum approach being taken. If I am not mistaken, and feel free to correct me where appropriate, the general approach goes something like this:

    1) Researcher/Scientist decides to investigate some aspect of a condition/disease based on previous work or the work of other researchers.
    2) In order to perform his/her work the researcher must acquire the necessary funds and obtain the appropriate approval for the work. This may require writing grant proposals, ethical reviews etc…
    3) If funds are not available, he/she returns to Step 1.
    4) Once the funds have been secured the work is carried out independently or in collaboration with one or a few other researchers.
    5) Upon completion of the research, a paper may be written and published to disseminate any newly discovered information but also as an aid to help secure future funding.
    6) Return to Step 1

    This is a little simplified, but I think the basics are there.
    Here is where I see problems with this approach. First it is the researcher that decides what to investigate. I will elaborate on why this is a potential problem a little later. Next the coordination/cooperation with other researchers is limited at best. The fact that the work is being done along with the progress and interim results of the work will not be known until the work is complete and usually peer reviewed and published. This leads to serialization of research and the inability to plan for alternate approaches by others until the original research is complete. The fact that others are not aware that a particular type of research is being done can also lead to unnecessary duplicate work. Additionally I believe there is a bit of secrecy/turf protection that goes on within the research community. Another issue is that it is up to the researcher to develop their own funding either directly or indirectly. While some researchers may be fortunate enough to be associated with large universities or medical institutions that handle the solicitation of funds, the researcher must still apply for those funds. Lastly, no one is overseeing the big picture and making sure the research is moving “us” to the ultimate goal whether that goal is a cure or some intermediate treatment.
    This leads me back to why I think the researcher may not be the best person to decide what needs to be researched. Let me provide a simplified analogy. Suppose that the goal was to put a man on the moon. Arguably a fairly complex task that requires the talents of thousands of engineers of varying types, managers, subcontractors etc…. If NASA had announced that they wanted to put a man on the moon and left it to the engineers to decide on their own what part of the project to work on, we would still be wondering if the moon was made from cheese. Not because we did not have talented engineers or because engineers are not organized but because the infrastructure to efficiently manage such a large project was not in place. This was one of NASA primary tasks, to provide all of the necessary bureaucracy to allow the engineers to be engineers and facilitate the coordination of various parts of the program.
    Turning the discussion back to SCI and the reason I think that researchers may not be in the best position to decide what part of the problem to work on (please note that this is not an attack on researchers). First a researcher can only research what they can obtain funding for so the natural result is to follow the money. Second a researcher may be more interested in pursuing something that they find interesting but is not consistent with achieving the goals of the project in the most efficient manner, i.e. someone needs to keep an eye on the big picture. Another potential problem is a researcher who has little or no experience in a particular area attempting to carry out research in that area. I’m not saying this happens or is a widespread problem but the potential seems to be there. With stem cells being such a hot topic and new sources of funding becoming available I can see someone wanting to jump on the bandwagon.

    So what is the point of all of this? To explore an alternative approach that accelerates the pace of research and allows researcher to do what they do best, research. This would involve the following aspects:

    1) Develop an organization which handles the fund raising aspects for research removing that task from the researcher. This is somewhat in place but the researcher must still apply for grants.
    2) In additional to fund raising the other primary task of the foundation would be to guide the research using a project plan with defined goals. This would entail the organization to identify the research to be conducted to achieve the goal.
    3) The organization would invite researchers to apply for the defined projects. This would allow the organization to select the researcher most suited/experience for a given task.
    4) The exchange of information and interim research progress updates would be handled by the organization and not left up to the individual researcher.
    5) With a board overseeing the project, duplicate or near duplicate research would be eliminated along with research not directly targeting the ultimate project goal.

    I am not proposing a big brother oversight committee for SCI but I am saying that there does need to be some better coordination and management. This might be at the state level or whatever seems appropriate. Using SCI as an example, if things were coordinated at the state level it might be possible to have one state with fewer financial resources focus all of those resources on one aspect of SCI while a state with more resources could focus on two or more other aspects of the SCI solution. Having such committees at the state level make it easier to coordinate at the sate level.

    This is just my perspective but I’m curious as to what others think.

  2. #2
    Senior Member lynnifer's Avatar
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    I think you bring up some excellent points and I like your idea of a committee or group overseeing the research - especially being comprised of actual people with the ailments ... but the only problem is that private research will continue ... nothing will change ... research would still be scattered.

    How do we change that? I like the idea of going through WHO, like Carbar has been alluding to recently.
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  3. #3
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    I think the idea of having an organization to handle coordination and funding is a sound idea. I have a lot of people in my family involved with research (engineering related, not medical, oh well) and I see that the BETTER they are at their jobs, the more they hate procuring the funding and support. Having an organization that looks at the big picture would help coordinate all of the excellent research that is going on, and see any gaps in it. Interesting post.
    T7-8 since Feb 2005

  4. #4
    IMO, what the field of SCI research lacks and has always lacked, hence the delay of a cure, is a federal funding commitment, coordination network and the infrastructure to conduct clinical trials. Cancer research has this and in 30 years, cancer has progressed from being almost incurable to survivable in 90% of the early detection cases. Cancer research gets significantly more NIH funding, has the support of cancer sufferers, survivors and the general support of those not yet afflicted. Cure research is not supported by everyone with an SCI nor many of those not yet touched by an SCI and traditionally, it has been at the lower end of the NIH's funding priority list.

    Steven posted a link to the impressively efficient organizational network responsible for bringing cancer cures to cancer victims. I'll find it in a bit.

    Here it is: http://sci.rutgers.edu/forum/showpos...3&postcount=19
    This is what we need and what we'd get if the CRPA Bill was passed.
    Last edited by antiquity; 03-25-2007 at 05:02 PM.

  5. #5
    Lynnifer - Thanks for the feedback. I'm not saying that this would eliminate all scattered research, Everyone is free to pursue ther own interests if they obtain their own funding. What I am saying is that groups and states that dole out the money for SCI and other research should take a more active role in trying to define goals and drive the research towards that goal. We have all read many "another rat walking" stories but where is the follow up research? One issue I have that I have ( and I have many) is the unwillingness to try a potential therapy because of the fear it might harm the patient. What is not taken into account is that harm is already being done. Christopher Reeves is dead. That seems pretty harmful to me. Suffering with pain and the other problems associated with SCI including death is harmful. Just because a physician did not cause the harm does not mean that harm is not done.

    Sjean - since your kind of a neighbor you know that our state has the facilities to do something like this. Did you notice the grants an axon regeneration and neural stem cell differentiation which were recently awarded?

    Antiquity - Most of your points are valid. It's not suprising that Cancer get more funding, more people are affected. Plus most cancer patients can advocate for themselves, many SCI patients cannot. A lot of the improved survivability of cancer has to do with earlier detection. I'm not saying that there have not been improvements in available treatments but there is definitely more awareness to get tested for breast, prostate, skin cancer etc...
    CRPA does mention better coordination but why wait for CRPA to pass. I have done my part to write and phone to support CRPA an will continue to do so but you do not need CRPA to have better coordination in research.

  6. #6
    Senior Member artsyguy1954's Avatar
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    Some excellent points there.
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  7. #7
    Senior Member Leo's Avatar
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    good points lightspeed,

    but isn't what your saying exactly what MP is

    their a fundraising machine, freeing up researchers, top researchers that get top priority on N.I.H grants

    they could i think pull off a say 20 patient trial

    but nada, no bash session needed


    the NASA idea would work if SCI we're one of our nations priorities and the priority of our national leaders

    state level does give you more of a handle on the problem but you still have politics, duh eh

    we just finished a basic science study that failed, which ain't bad in that the results can show what not to try

    and this brought up some thing i never thought of,

    how do we get that info out there

    most only read the breakthrough stuff

    i wonder if cancer patients are as up to speed on research as sci

    since we're low on numbers do we have to know more

    anyway rock on and make it to DC if possible
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  8. #8
    Litespeed,

    Very good post and many good idea. Let me play Devil's advocate and point out some reason why it would not work.

    1. What you describe is essentially what industry does and their track record has not been anywhere close to the productivity of universities in producing major therapeutic advances. By the way, the reason they don't do it for spinal cord injury is because it is considered to be too small a market.

    2. The National Institutes of Health has generally been considered the best and most productive model of scientific research ever created. It uses peer-review to select the best science to be funded, to provide training and resources to facilitate research, and creating infrastructure needed for science to move forward efficiently. Other countries with other models have not been as productive. For example, the German approach is to fund the Max-Plancke Institutes and giving the institutes a lot of money to recruit and fund scientists. The Chinese approach is to create 20-year plans and plow millions of dollars into the big "connected" institutes to spend the money as they see fit. The Japanese system has been to fund the senior leaders of the field and allowing them to fund the younger investigators.

    3. The problem is not the funding mechanism but simply lack of funding. This year, the NIH will be spending only $64 million on spinal cord injury research. They were spendign $50 million in 1995. Industry estimates that it takes $800 million to move one therapy from discovery to market. Cure of spinal cord injury would be one of the major accomplishments of humankind, a task that is much more difficult that cure of AIDS.

    Wise.





    Quote Originally Posted by litespeed4
    When looking at the approach being used for developing a treatment / cure for any affliction, not just SCI, there seems to be a less than optimum approach being taken. If I am not mistaken, and feel free to correct me where appropriate, the general approach goes something like this:

    1) Researcher/Scientist decides to investigate some aspect of a condition/disease based on previous work or the work of other researchers.
    2) In order to perform his/her work the researcher must acquire the necessary funds and obtain the appropriate approval for the work. This may require writing grant proposals, ethical reviews etc…
    3) If funds are not available, he/she returns to Step 1.
    4) Once the funds have been secured the work is carried out independently or in collaboration with one or a few other researchers.
    5) Upon completion of the research, a paper may be written and published to disseminate any newly discovered information but also as an aid to help secure future funding.
    6) Return to Step 1

    This is a little simplified, but I think the basics are there.
    Here is where I see problems with this approach. First it is the researcher that decides what to investigate. I will elaborate on why this is a potential problem a little later. Next the coordination/cooperation with other researchers is limited at best. The fact that the work is being done along with the progress and interim results of the work will not be known until the work is complete and usually peer reviewed and published. This leads to serialization of research and the inability to plan for alternate approaches by others until the original research is complete. The fact that others are not aware that a particular type of research is being done can also lead to unnecessary duplicate work. Additionally I believe there is a bit of secrecy/turf protection that goes on within the research community. Another issue is that it is up to the researcher to develop their own funding either directly or indirectly. While some researchers may be fortunate enough to be associated with large universities or medical institutions that handle the solicitation of funds, the researcher must still apply for those funds. Lastly, no one is overseeing the big picture and making sure the research is moving “us” to the ultimate goal whether that goal is a cure or some intermediate treatment.
    This leads me back to why I think the researcher may not be the best person to decide what needs to be researched. Let me provide a simplified analogy. Suppose that the goal was to put a man on the moon. Arguably a fairly complex task that requires the talents of thousands of engineers of varying types, managers, subcontractors etc…. If NASA had announced that they wanted to put a man on the moon and left it to the engineers to decide on their own what part of the project to work on, we would still be wondering if the moon was made from cheese. Not because we did not have talented engineers or because engineers are not organized but because the infrastructure to efficiently manage such a large project was not in place. This was one of NASA primary tasks, to provide all of the necessary bureaucracy to allow the engineers to be engineers and facilitate the coordination of various parts of the program.
    Turning the discussion back to SCI and the reason I think that researchers may not be in the best position to decide what part of the problem to work on (please note that this is not an attack on researchers). First a researcher can only research what they can obtain funding for so the natural result is to follow the money. Second a researcher may be more interested in pursuing something that they find interesting but is not consistent with achieving the goals of the project in the most efficient manner, i.e. someone needs to keep an eye on the big picture. Another potential problem is a researcher who has little or no experience in a particular area attempting to carry out research in that area. I’m not saying this happens or is a widespread problem but the potential seems to be there. With stem cells being such a hot topic and new sources of funding becoming available I can see someone wanting to jump on the bandwagon.

    So what is the point of all of this? To explore an alternative approach that accelerates the pace of research and allows researcher to do what they do best, research. This would involve the following aspects:

    1) Develop an organization which handles the fund raising aspects for research removing that task from the researcher. This is somewhat in place but the researcher must still apply for grants.
    2) In additional to fund raising the other primary task of the foundation would be to guide the research using a project plan with defined goals. This would entail the organization to identify the research to be conducted to achieve the goal.
    3) The organization would invite researchers to apply for the defined projects. This would allow the organization to select the researcher most suited/experience for a given task.
    4) The exchange of information and interim research progress updates would be handled by the organization and not left up to the individual researcher.
    5) With a board overseeing the project, duplicate or near duplicate research would be eliminated along with research not directly targeting the ultimate project goal.

    I am not proposing a big brother oversight committee for SCI but I am saying that there does need to be some better coordination and management. This might be at the state level or whatever seems appropriate. Using SCI as an example, if things were coordinated at the state level it might be possible to have one state with fewer financial resources focus all of those resources on one aspect of SCI while a state with more resources could focus on two or more other aspects of the SCI solution. Having such committees at the state level make it easier to coordinate at the sate level.

    This is just my perspective but I’m curious as to what others think.

  9. #9
    Thanks for your response Dr. Wise. I was not aware of the approach other countries take. When you say the market is too small for SCI it really is another way of saying there is no money to be made in SCI in developing cures for SCI.
    Just to clarify a bit more. I am not advocating that there be a big brother approach to controlling research in the US. What I am advocating is a much smaller focused approached to research. Just as a large company can have many concurrent product develpment teams, each focused on developing their product and getting it to market.
    From the NBH SCI Progress, Promises , Priorities: http://books.nap.edu/openbook.php?record_id=11253&page=183
    The pressing issue is how best to improve the current organization of basic and clinical research—the research infrastructure—to nurture and accelerate progress.
    To much beauracracy can smoother progress, but the right amount can free people to do what they excel at and accelerate progress.
    The way I view SCI research (this is in no way directed at you) is like a group of people trying to paint a house with paintball guns but they only have one gallon of paint (money) They eventually will get more paint and shoot up the house some more. Eventually the house will get painted, but maybe it would have been better to focus on painting the front door rather than the entire house. It's a crude analogy but I think you get the idea.

  10. #10
    Senior Member artsyguy1954's Avatar
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    Quote Originally Posted by Wise Young
    3. The problem is not the funding mechanism but simply lack of funding. This year, the NIH will be spending only $64 million on spinal cord injury research. They were spendign $50 million in 1995. Industry estimates that it takes $800 million to move one therapy from discovery to market. Cure of spinal cord injury would be one of the major accomplishments of humankind, a task that is much more difficult that cure of AIDS.

    Wise.
    When I see these numbers, I can't help but feel discouraged, Dr. Young. Considering that we SCI's are of little interest to the profit oriented pharmaceutical industry, due to our small numbers and we are not a top priority for governments either; what is left?

    Hoping for a miracle is pretty much out of the question, the whole concept does not fit into the zeitgeist of our times. -- But maybe a serendipitous discovery will push spinal cord research over the top and fill in the missing pieces of the puzzle.

    There are many examples of this in the history of scientific discovery. Some rather well known examples of this are the accidental discovery of X-rays by Wilhelm Roentgen, the fortuitous discovery of electromagnetism by Hans Christian Oerstedt or the process of vulcanization by Charles Goodyear. The list goes on. Serendipity has a long and honourable tradition in the history of scientific enquiry. It could happen again, it could happen in spinal cord research. Who knows?

    This might be an interesting topic for a thread in the science forum.
    Last edited by artsyguy1954; 03-27-2007 at 07:06 PM.
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