Activities/Proposals/Cancer Research

Create a website to collect simple data about cancer treatments directly from patients

Outline

When people are diagnosed with cancer they could be given a card by their doctor which would give them an id and password to a website which they could use to upload simple data about what treatments they are undergoing and how they are feeling on a monthly (approx) basis. They would only need to enter details of birth date, sex, type of cancer, stage when diagnosed and date of diagnosis on their first visit to the website. After that they could add entries about treatments and their duration and how they are feeling at that time every month or so. This would take only a few seconds for the updates and a minute or two for the initial data. After a few years the database would develop into a valuable resource which could be used to determine the effectiveness of various cancer treatments including the alternative types which are not recorded effectively at the moment.

Benefits

After a few years the database would develop into a valuable resource which could be used to determine the effectiveness of various cancer treatments including the alternative types which are not recorded effectively at the moment.

This would not only help to indicate which treatments are most effective but might help give clues to researchers. It would also provide data about alternative treatments which would be unbiased by mainstream scientists as the people entering the data would have been patients themselves and raw data could be released for analysis by non-medical as well as medical experts all treatments would therefore be on the same footing and any effective treatments could be found without being influenced by prejudice against less scientific treatments. Even if some treatments were shown to be ineffective, that would be a good thing as people would have a better understanding about what works and what dose not.

Requirements

This idea would be far more effective with the full co-operation of the NHS - the id numbers could actually be NHS numbers and the NHS could have a direct interface to the data and check the inputs against their own , massive databases (these do not have information about haw patients are faring on a monthly basis or what non-NHS treatments they are trying so the new information could be potentially very useful) Otherwise the cost is minimal as the patients themselves do the data input on their own computers (or those available in libraries etc.) but some cooperation from the nhs is still needed to give out the cards to patients in the first place. I have written some very simple web pages which gather the type of information as I have described above

Volunteering

I have written some very simple web pages which gather the type of information as I have described above and have had several friends try them out If you're interested in helping out with this proposal, please sign below with *~~~ I would be pleased to help with this and provide the work that I have done so far in writing the basic webpages zbigniew.lesiak@ntlworld.com

Discussion

This idea could be extended enormously to cover various other illnesses and other aspects of health other than treatment such as diet, exercise, location and several others. The data could eventually become hugely valuable for patients, doctors and drugs companies. One example of how this type of information could be useful is in the recent news about aspirin having such an unexpected effect on cancer survival rates.