Research into CTS in Canterbury
The department of clinical neurophysiology in Canterbury has been conducting research into CTS for over 25 years using the information which we collect from ordinary patients when we see them. That work has directly led to the setting up of the clinic which we run specifically for patients with CTS. We are all becoming more concerned about the use of our personal data. If you complete the questionnaire here then you are providing us with information, even if you use the site anonymously. This page explains how we use data, why we still need YOUR data now and what we will do with it.
What information do we store, how and why?
Every answer which you give on the symptom questionnaire is stored on the website. This is moderately secure but, as is stated in the security and confidentiality statement it is vulnerable to attack and we therefore recommend that you do not add material which clearly identifies you to the site if you are concerned about this. If you attend the Canterbury CTS clinic we will copy the information you have provided via the website into your clinical records and will add your test results, records of treatments which we provide and records of how you respond to treatment. All of this data together is known as the 'Canterbury Carpal Tunnel Database' and this database, as part of your medical record, is stored as securely as any other NHS computerised personal data. It is not copied back to the website and there is no way for a hacker who compromises the website to use that to gain access to the main database.
The Canterbury Carpal Tunnel Database now contains records of 40,694 individual patients (25th May 2015). Having access to data about such a large number of individuals allows us to look for answers to many questions about the investigation and treatment of CTS using the same pool of patients. For example it has recently been claimed in a small study from Estonia (164 patients), that patients who have local steroid injections before surgery for their CTS have poorer surgical outcomes than those who proceed straight to surgery without having any injections. We have been able to identify 943 patients from the database in which to study this and shown quite clearly that this is not the case. Questions such as this often require that many possible influences on the outcome of treatment are taken into account and thus require large numbers of patients to obtain statistically reliable answers. The larger our database becomes, the more questions we can tackle and the more reliable are the answers we obtain.
Why do we need data from everyone ?
It is not just the size of a sample of patients which affects the reliability of the answers we get to research questions. It also matters whether the patients studied are representative of the wider population of people with CTS. We cannot for example carry out a study in women only and then expect that the answers will necessarily apply to men too. Many scientific studies of CTS have been carried out in patients who have already been referred to surgeons for operation and it is clear that this sub-population of CTS patients is not at all representative of all patients with CTS. Ideally one would like to carry out scientific studies either on the entire population of people with CTS, or perhaps more realistically, on a randomly chosen sample of such patients. In Canterbury we are fortunate that as a consequence of the way local NHS services are organised in our area, almost all patients who get as far as seeing a doctor about their CTS are referred to us for diagnosis. Therefore the only group of CTS patients that we do not see are the ones that never consult a doctor about their symptoms. This means that the records of the Canterbury CTS clinic are an almost uniquely accurate description of the symptoms, test results and treatment responses of an entire population of patients with CTS. However, for this to remain the case it is essential that all of the patients allow us to include their data in our studies. The more patients 'opt out' the less representative the data becomes and the greater the chance of us making mistakes in interpreting what the data means for future patients.
Consent to use of data
Over the last 20 years in the UK the regulation of medical research has become increasingly formalised. A long-standing core concept is that patients should give informed consent before participating, for example, in a trial of a new drug. However informed patient consent is now also required simply for us to use patient data for 'research' purposes. You will therefore find that both the website questionnaire and the paper version which we use in the Canterbury department ask you specifically to consent to the use of your data for research. In answering the consent question we would ask that you think about the reasons that we have given above for wanting to use this data and the fact that much of the advice we are able to give you comes from studying previous patients.
The following items should also be noted:
Anonymous vs Identifiable data - All of the studies which we carry out using the Canterbury Carpal Tunnel Database are done with anonymised data. That is, the first thing we do when starting a study is identify from the database which patients records contain information that would be useful in answering our question. We then extract the information we are interested in WITHOUT the patient names, addresses and other identification. The further analysis of the data is then performed on this extracted subset and when the results are published it is impossible to identify the individual patients whose data was used.
Uses/Sharing - The data will only be used to answer clinical questions about CTS, that is, questions which a patient might reasonably want to know the answer to when deciding their own treatment. It will never be used for marketing or commercial purposes and will not be shared with anyone who does not have a legitimate clinical interest in CTS.
Revoking permission - we keep a record of whether you have given us permission to use your data in anonymised form (should we ever want to publish identifiable data we would of course ask you separately for explicit consent). You may withdraw this permission or re-instate it at any time by contacting us. The website database is separate and we have added a checkbox to the account settings page which allows you to change this permission for the data stored on the website yourself. For the website you may also ask for your account to be deleted entirely. There is a formal privacy policy for the website. You cannot, of course, ask for your medical records (of which the Canterbury CTS database is a part) to be thrown away.
What next?
A list of current research projects with some information about them is found here. We cannot put details of everything we are considering doing on the website because in some cases we are applying for research funding and the application processes for some funding agencies prohibit us from putting such information in a public forum during the application process.
The UK research agencies are very keen that medical research should be driven in part by the priorities of NHS patients - ie that patients themselves should have a role in proposing research questions, deciding which questions have higher priority for funding, and in the design of studies to address those questions. The forum section of this website, and also some study of the keywords which people have been using in order to find their way to the site, has already made clear some of the issues in respect of CTS which are of concern to patients and this has been very useful in determining our priorities. Please keep further queries coming! If you have a question about CTS just post it in the forum.
Crowdsourced research
There are a few useful projects which could be tackled purely through people who visit the website participating directly in self reported experiments. An example of this would be an assesment of the reproducibility of the SSS/FSS questionnaire which we use to measure the subjective severity of symptoms. We wish to know how much variation in score we might expect by chance when the questionnaire is repeatedly filled in by the same patient whose symptoms have not in fact changed. This could be tested online simply by getting a group of people who we are fairly sure have CTS and who do not have other major pathology which may be causing hand symptoms (all of that can be worked out from the questionnaire) to complete the SSS/FSS twice, two weeks apart and to give an overall estimate when doing it the second time as to whether symptoms are the same, better, or worse. There are small studies of this question already but we could, between us, arrive at a much more reliable answer using this online mechanism if a few hundred or thousand people joined in. At present I am just thinking about the opportunities for this sort of study. If anyone reads this and is interested please post in the forums.
Revision date - 3rd November 2018
