Last week’s blog was partly about the problems of obtaining data regarding the use of medicinal cannabis for a project called the BMCR – The British Medical Cannabis Register. Since that blog was written the BMCR has been launched. Sadly a number of issues have become apparent in addition to the confidentiality aspect which lead on Friday to the taking down of links to the BMCR project from UKCIA.
I know that something akin to the BMCR is long overdue; as webmaster of this site I have heard many accounts of people using cannabis to relieve pain and to ease a wide range of conditions. UKCIA has a medical testimony section which has a huge number of submissions recorded and I have personally met many genuine medical users. What follows is an explanation of the issues I have with the BMCR. These are all issues which are easy to address and if they are then I will be only too willing to give the project my full backing.
A few weeks ago I was approached by Peter Reynolds, the founder of the project, to ask if I would like to serve on the council of the BMCR. This was more than an approach asking the UKCIA site to provide links, it was a request for me personally to endorse the BMCR and to play an active role in the development and running of it. The council contains some interesting and respected names and I looked forward to being involved in the development process. At present the council consists of:
Matthew Atha – Independent Drug Monitoring Unit
Chris Baldwin – Legalise Cannabis Alliance
Paul Flynn MP - House Of Commons
Victor Hamilton - Medicinal user
Prof. Les Iversen – Oxford University
Baroness Molly Meacher – House Of Lords
Colin Preece – Campaigner
Jason Reed - Medicinal user
Peter Reynolds – Writer
Jim “Pinky” Starr – Medicinal user
Edwin Stratton – Drug Equality Alliance
Dr Michael Vandenburg – Consulting Physician
Derek Williams – UK Cannabis Internet Activists
Now, despite running this cannabis law reform website and having enjoyed cannabis in times gone by, I am no longer a cannabis user and haven’t been for some years now. I only mention this because perhaps I didn’t fully consider the need for privacy until the issue cropped up on the UK420 forum a week or so ago. This developed into a very bad tempered exchange between Peter and the people on 420, but I was left with an understanding that there was a very real issue here and one worth taking seriously.
The BMCR isn’t a campaigning site, it’s not asking people to “stand up and be counted”, the very sound idea behind it was simply to try to gather data from some very vulnerable people and in time use it to expose the cruelty involved in the government’s prohibition madness.
Medical cannabis users are often very vulnerable people, they are forced to deal with the uncontrolled black market and also fear being raided by the police, they are between a rock and a hard place. Many medical users are deeply unhappy about the situation they find themselves in, often being ashamed of the fact that they are breaking the criminal law. They have everything to lose by putting their head even a little bit above the parapet and we have to remember that.
To my way of thinking there isn’t an issue with data security if the data collected doesn’t contain any elements which need security. What the BMCR clearly needs is a way to collect the data anonymously in such a way as the person submitting the information cannot possibly be traced. This is actually surprisingly easy to do and I suggested one method.
If it was felt that some kind of check needed to be made on the person submitting the form, the best we could do was to ensure the e-mail address was genuine. It’s not much of a check but it’s the best we have. Because of this I suggested people respond to an invite by e-mailing the BMCR and are then sent a link to a webpage form. No personal data are collected on the form and there is no link to the original e-mail.
I suggested this to Peter in private e-mails and then via a comment in his blog and was given the distinct impression these concerns were understood and that the person designing the system – Carolyn Cameron – was going to come up with something similar to my suggestion. Carolyn replied to my suggestion in Peter’s blog comments:
Derek I like your idea of signing up by invite only as it would certainly cut down on spammers and would allow BMCR more control over the users who are signing up and submitting their information. I have an idea what could be used for this to ensure this. Will get back to you as soon as possible regarding this!
I heard no more and in the event the form went online with no such safeguards. It even asks for address and postcode although these are optional – but why are they even there?
Other concerns I have with the form are observations about the info the form asked for which apart from asking about the conditions users may suffer from are pretty well unchanged from the original draught; for example the section headed “user type” offers a list of options which include “media”, “supporter” and “user”, I simply don’t understand what it’s asking!
Some really obvious questions weren’t included such as “age” or “gender” and there are no other questions relating to location other than the optional full address – asking for the the nearest city or county would do for example. It might be interesting to know if the person is employed full time or part time, a housewife, bed bound or whatever.
A question asking if a person has been denied SATIVEX might be useful.
There are a number of other shortcomings with the form and there are probably others which would have been suggested had we had a chance to really shake the idea down before it went live, but that hasn’t happened. There are a number of professional people on the council with a great deal of experience of collecting data who surely could have made suggestions.
There has been no debate or communication between the council members that I am aware of. Peter has a Facebook page but that’s hardly a proper forum for planning.
In a comment to last weeks blog Peter wrote about the issues I’ve raised leading to the removal of the links to BMCR:
This sort of behaviour is exactly the reason that the cannabis lobby has failed so miserably to make any progress in this country and is the same reason that Proposition 19 failed in California. People allow their egos and vested interests to get in the way of the bigger picture.
Actually the reason the cannabis lobby has been as ineffective as it clearly has been is more down to people rushing headlong into projects and not being willing to listen to well intentioned criticism and suggestions. This has caused so much wasted effort and so many well intentioned projects to come off half-cock. Peter claims in his blog to have a lifetime of professional experience, as such he should be aware of how to brainstorm for ideas, how to shake ideas down and to stress test things before going public.
Whatever happens regarding my involvement with the project and whether or not UKCIA will carry the links again I wish the BMCR well. To be fair even if it comes off especially well though the data is always going to be compromised because of the stranglehold imposed by prohibition on the gathering of data. But with luck it might shine a light on the scale of medical cannabis use and go some way to exposing the hypocrisy of government. It could be a very good resource if it’s done properly.
All my comments have been made in good faith and are intended to be constructive. I still hope these issues will be resolved.
Update Monday 9.00am.
Seems the above comments are redundant as I appear to have been dropped from the BMCR council, a unilateral decision by Peter Reynolds.
I did not resign and have not been informed of any descion to sack me. Peter is obviously in sole charge of this project and unwilling to listen to advice however well intentioned.
I wish him with his project well but sadly I cannot recommend anyone support the BMCR.