Hidden Agenda?
by WhitePJ
on February 11, 2010 at 09:53PM
Dear MHRA,
Please explain the rationale behind this proposal, and the evidence for doing so.
Why the contribution is important
The MHRA holds a comprehensive database of PILs and SPCs for all authorised medicines. These are available online for some medicines but not for the products most often prescribed or bought.
The quote is from the home page. The italics are my emphasis.
Since we now all try to the tenets of Evidence Based Medicine, could you please back up this statement with facts? Which 'most commonly prescribed' items can I not find on EMC?
What initially started as a light-hearted rant about the EMC has now given way to experience-induced cynicism. Why *do* we need an alternative? Who is paying? If on-line access is desirable, why do the MHRA dictate that it should be available on the EMC, rather than setting up a completely new site?
Who is the main beneficiary of this proposal - the patient, or the MHRA?
Another question: Why are you tracking my personal email click-through's in a deceptive manner?
http://www.mhra.gov.uk/home/idcplg?IdcService=SS_GET_PAGE&ssDocName=CON071157
(For non-techies, the above URL actually points to a United States website (Culver City), for the purpose of click-through tracking. The URL contains data which uniquely identifies me, as well as the official MHRA email that I was sent via their alert service. The URL is reproduced above exactly as it was sent to me.)
I don't mid you click-through tracking me. I *do* object to you trying to do it in such a deceptive manner.
Posted by
WhitePJ
February 17, 2010 at 11:14PM
Thank you for the reply.
You make the statement "there is currently no way patients and healthcare providers can access information on other medicines"
Yet, searching under 'Codeine' will supply 65 documents, including Cuprofen Plus, Feminax, Panadol Ultra, Solpadeine, Syndol & Veganin. All are OTC. None of these products should ever appear on a prescription.
Your point on the majority of generic products is true. However, you make no argument why this should be necessary. A generic product is, by definition, standardised. I interchange products at whim, because I can rely on them all being identical (with the exception, perhaps, of excipients). Is there any reason why the PIL could not be standardised to match also?
Present the average user with (say) 423 documents after a search for co-codamol (and even more for just codeine). Is that helpful in any way? We all suffer from information overload as it is. Making it impossible for a patient to find the information they require because it is hidden within a morass of search results is not empowerment in any way. Does the patient even know how to identify APS manufactured products from GUK if the pharmacist has dispensed a part-pack into a white dispensing box?
Again, you make no comment on why it should be the MHRA who need to implement this. Yes, I am aware that the ABPI is a voluntary membership group - however, there is the possibility to negotiate the hosting of all PIL's through them, surely? In general, I have seen few government-sponsored IT projects that have been a resounding success. We are still smarting from the troubles of NPfIT.
So, we still need to know: Who is paying for this venture? Why, if the licensing of generic medication can be standardised, can the PIL not be? Why can the requirement to have the current PIL and SPC to be available through EMC not be made mandatory?
---
Regarding click-through tracking; I am somewhat sceptical of your response. I am a network administrator. I used to administer the UK's largest dancing email distribution list, serving over a hundred dance venues, and thousands of subscribers. I am, shall we say, familiar with the principles here.
Each email is unique. It is personally addressed to me, and has the ability to determine my specific actions with that individual email. Therefore, it is, by definition, personal. Whether you *do* track me is immaterial. You certainly have the potential ability to do so. My objection is that I have no way of verifying if this is done or not. ('You' being defined as the aggregate of the MHRA plus any intermediaries providing the service.)
GovDelivery (in the US) specifically state that they may share this data. They also state explicitly that they may do individual analysis (contradicting your earlier statement). Again, they explicitly state their use of *individual* tracking. All your (their) settings are opt-out, rather than opt-in.
The tracking code is 195 alphanumeric characters long, and is case sensitive. That is a *very* large storage space. Since you cannot provide me with a means of decrypting that information, I have the right to be sceptical of your assertion.
Your privacy policy contains just 3 sentences on the Data Protection Act 1998. Nowhere (that I can find) do you mention that my data is being shared with a company outside the EU. You are required to notify the Data Protection Commissioner if this is done. Have you?
Your site is *not* P3P compliant. It attempts to be, but does not have a policy reference file attached to it.
References:
http://www.mhra.gov.uk/Termsandconditions/index.htm
https://subscriptions.mhra.gov.uk/w3c/p3p.xml
You make the statement "there is currently no way patients and healthcare providers can access information on other medicines"
Yet, searching under 'Codeine' will supply 65 documents, including Cuprofen Plus, Feminax, Panadol Ultra, Solpadeine, Syndol & Veganin. All are OTC. None of these products should ever appear on a prescription.
Your point on the majority of generic products is true. However, you make no argument why this should be necessary. A generic product is, by definition, standardised. I interchange products at whim, because I can rely on them all being identical (with the exception, perhaps, of excipients). Is there any reason why the PIL could not be standardised to match also?
Present the average user with (say) 423 documents after a search for co-codamol (and even more for just codeine). Is that helpful in any way? We all suffer from information overload as it is. Making it impossible for a patient to find the information they require because it is hidden within a morass of search results is not empowerment in any way. Does the patient even know how to identify APS manufactured products from GUK if the pharmacist has dispensed a part-pack into a white dispensing box?
Again, you make no comment on why it should be the MHRA who need to implement this. Yes, I am aware that the ABPI is a voluntary membership group - however, there is the possibility to negotiate the hosting of all PIL's through them, surely? In general, I have seen few government-sponsored IT projects that have been a resounding success. We are still smarting from the troubles of NPfIT.
So, we still need to know: Who is paying for this venture? Why, if the licensing of generic medication can be standardised, can the PIL not be? Why can the requirement to have the current PIL and SPC to be available through EMC not be made mandatory?
---
Regarding click-through tracking; I am somewhat sceptical of your response. I am a network administrator. I used to administer the UK's largest dancing email distribution list, serving over a hundred dance venues, and thousands of subscribers. I am, shall we say, familiar with the principles here.
Each email is unique. It is personally addressed to me, and has the ability to determine my specific actions with that individual email. Therefore, it is, by definition, personal. Whether you *do* track me is immaterial. You certainly have the potential ability to do so. My objection is that I have no way of verifying if this is done or not. ('You' being defined as the aggregate of the MHRA plus any intermediaries providing the service.)
GovDelivery (in the US) specifically state that they may share this data. They also state explicitly that they may do individual analysis (contradicting your earlier statement). Again, they explicitly state their use of *individual* tracking. All your (their) settings are opt-out, rather than opt-in.
The tracking code is 195 alphanumeric characters long, and is case sensitive. That is a *very* large storage space. Since you cannot provide me with a means of decrypting that information, I have the right to be sceptical of your assertion.
Your privacy policy contains just 3 sentences on the Data Protection Act 1998. Nowhere (that I can find) do you mention that my data is being shared with a company outside the EU. You are required to notify the Data Protection Commissioner if this is done. Have you?
Your site is *not* P3P compliant. It attempts to be, but does not have a policy reference file attached to it.
References:
http://www.mhra.gov.uk/Termsandconditions/index.htm
https://subscriptions.mhra.gov.uk/w3c/p3p.xml
Posted by
klkl
February 23, 2010 at 12:16PM
Regarding WhitePJ's concerns...
I commented in another post about how useful I would find a database that included generic medicines. I often have requests for medicines that do not contain particular excipients and while my various wholesalers are helpful to a degree, I have found, I have much more success and can resolve problems for patients more effectively, when I can actually tell the wholesalers which manufacturer's product I am looking to obtain. Of course this is dependent on having access to that particular manufacturer's product literature.
Information overload only becomes a problem if it is allowed to. With logical design and simple yet powerful search and filtering functionality it is an easy matter to quickly find what you're looking for, provided you yourself know what that is.
Your suggestion of a standardised PIL for patients is an interesting one but will not help patients when they have intolerances to particular excipients. As for such an information resource being unusable by members of the public then if they have any doubts then that is when they should consult pharmacists their local experts.
I commented in another post about how useful I would find a database that included generic medicines. I often have requests for medicines that do not contain particular excipients and while my various wholesalers are helpful to a degree, I have found, I have much more success and can resolve problems for patients more effectively, when I can actually tell the wholesalers which manufacturer's product I am looking to obtain. Of course this is dependent on having access to that particular manufacturer's product literature.
Information overload only becomes a problem if it is allowed to. With logical design and simple yet powerful search and filtering functionality it is an easy matter to quickly find what you're looking for, provided you yourself know what that is.
Your suggestion of a standardised PIL for patients is an interesting one but will not help patients when they have intolerances to particular excipients. As for such an information resource being unusable by members of the public then if they have any doubts then that is when they should consult pharmacists their local experts.
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Re tracking email click-throughs - while the MHRA email alerts do contain some tracking code this is not personalised in any way.
We cannot relate any clicks back to an individual from any links within the email. This tracking code is used to measure how many of our emails have been opened and then if a link has been clicked. This is standard functionality of the email alerting service that we use which is based in the United States. This tracking enables us to measure the effectiveness of our service and cannot be used to track the actions of a individual.
Jane Viner
Head of Web Services, MHRA