Over four years after its slated launch, the NHS Cannabis Patient Registry is set to publish its first data.
The years of obfuscation and delay prompted a Freedom of Information request by Business of Cannabis, which has established that the NHS will publish data from its ‘registry’ by the ‘end of the year’.
However, from our industry soundings – and despite its four-year gestation – it is still unclear whether the UK registry, currently, even exists in a usable form.
And, there is speculation as to whether the six-month window will allow the NHS time to assimilate the relevant data.
During our investigations into the workings of the registry it became clear that the two organisations tasked with its delivery were more concerned with back-heeling responsibility to the other, than supporting patients.
Those with knowledge of the workings of the NHS say that even now, four years down the line, the vast majority of prescribing medical cannabis consultants are unaware of the registry’s existence.
Nevertheless, for the NHS to eventually accept that it needs to fulfil the mandate it was given by the UK Government and acknowledge and monitor the role cannabis can play in a clinician’s toolkit is, in itself, a welcome development.
Professor Mike Barnes, Chairman of the Medical Cannabis Clinicians Society, believes the registry, as it was envisaged at the time of its 2021 launch, probably does not exist.
He said: “There are around 170 prescribing clinicians; I know most of them, and it is never talked about or discussed.
“Hopefully, they will tell us, openly by the end of year, what has happened, how many patients have been treated, and what they intend to do about making it a meaningful and helpful registry.
“By making it more accessible and available to clinicians it will be a more meaningful resource. Nevertheless this has been a missed opportunity to record some really helpful data over the last few years.”
Disappointingly, the registry will only cover the 1,000-or-so patients receiving the three NHS licensed medicines – Sativex, Epidyolex and Nabilone – and the six UK patients currently receiving ‘specials’, i.e. whole-plant formulations.
Pierre van Weperen, Managing Director of leading commercial cannabis supplier Grow Group UK, highlighted this flaw and stressed the need for the registry to include the private-prescription market in the UK, which supplies around 60,000 patients.
He said: “The registry only picks up NHS patients so that’s epilepsy and Multiple Sclerosis with Epidyolex and Sativex. I am not optimistic about the longer term data for epilepsy because we know that at some point these kids need at least a hint of THC.
“Sativex is prescribed off-label for pain and I would hope that they have captured this data.
“More importantly though, and this is the most interesting point, the NHS should open the registry for all patients who are using prescription medical cannabis.
“It would be the ideal way to capture data nationally and drive insights. I am sure that the clinics and patients would be happy to co-operate for the greater good.”
Sal Aziz, of PatientsCann UK, a medical cannabis patient network, who works in the NHS says many of the 200-plus NHS trusts are still not aware they can prescribe cannabis.
“I have spoken to many directors, at senior levels, in many trusts and they still say the NHS does not prescribe medical cannabis and we cannot talk about it as it exposes us to a reputational risk.
“My biggest worry with this register is that it will show that not many of the trusts have used it, and the ones who have will not have been very good at recording their prescribing activities.”
Mike Morgan-Giles, CEO of the UK Cannabis Industry Council welcomed the development, with caveats, saying: “It is positive that NHS England is moving forward with the Cannabis Patient Registry.
He added: ”Though the Cannabis Industry Council would like to see the registry expanded to include unlicensed CBPMs prescribed by private clinics.
“Alongside enabling e-prescribing, such a step would build an evidence base for the NHS, protect patient data and help ensure that patients are able to access the medications they need.”
Prof Barnes reflected on the missed opportunity of the last few years and questioned the veracity of the NHS’ approach to cannabis, saying: “If they had mandated a registry or even a more basic, observational collection of data which included the private sector, they would have accumulated a lot of fascinating and interesting data for future prescribing.
“To make the registry useful it needs to take into account the private sector which accounts for 99% of prescriptions. So, as presently constructed the registry will be next to useless.
“And, unfortunately, this once again illustrates the total lack of interest by NHS England in this valuable medicine. They have never had any interest, still don’t have interest, and the farce of this registry demonstrates this.”
A 2019 NHS England and NHS Improvement report entitled ‘Barriers to accessing cannabis-based products for medicinal use on NHS prescription’ made a number of recommendations to support patient access.
One of these recommended that NHS England ‘should work with industry and academia to scope the development of a national UK patient registry to collect a uniform data set’.
The registry was launched in March 2021 with one of the UK’s largest health bodies, the NHS Arden and Greater East Midlands Commissioning Support Unit (CSU), chosen to ‘manage and host the patient registry’.
At the time of the launch Muhammed Vohra, project lead at the Arden & GEM, said: “By enabling the standardised collection of data for all patients being prescribed cannabis-based products our aim is to improve patient care through robust monitoring and evaluation.
“The registry supports clinical decisions to be taken, based on the latest guidance, so that we can keep patients safe while gaining better clinical evidence about the potential impact of these fairly recently rescheduled products.”
However, by late 2022 it became clear that the registry was not functioning as intended thus prompting the head of the NHS to write to all of its 200-plus trusts.
In a published letter Chief Professor Stephen Powis, National Medical Director of NHS England, and David Webb, NHS Chief Pharmaceutical Officer wrote to all trusts requesting that clinicians begin contributing to the registry.
It said: “NHS trusts should ensure that…all prescribers issuing prescriptions for CBPMs (Cannabis-based products for medicinal use) make relevant register entries and keep them up to date as soon as possible after prescriptions are issued.”
At the start of May this year Business of Cannabis asked both NHS England and NHS Arden and Greater East Midlands for details on the performance of the registry.
They passed the buck, back-and-forth, with Arden & GEM persistent in saying that as the ‘data controller’ it is the responsibility of NHS England.
Whilst the NHS England press office repeatedly said that as the data is held at NHS Arden and Gem, it is its responsibility.
However NHS England – following a Freedom of Information request – has backtracked from its position telling Business of Cannabis it ‘‘commits to publish(ing) information on the NHS England website related to this question in due course by the end of 2025’ see below.
Below is a full transcript of our inquiries, and NHS England’s responses:
1. Can you inform as to how many of the 200-plus NHS Trusts are recording this data on the registry?
– NHS England is withholding this information under Section 22 of the FOIA. NHS England is currently reviewing NHS Arden and GEM Commissioning Support Unit’s management of the platform and commits to publish information on the NHS England website related to this question in due course by the end of 2025.
2. How many patients are recorded on the register?
– NHS England is withholding this information under Section 22 of the FOIA. NHS England is currently reviewing NHS Arden and GEM Commissioning Support Unit’s management of the platform and commits to publish information related to this question on the NHS England website by the end of 2025.
3. Does the NHS collate this data into a national patient registry and assimilate the data to determine the effectiveness of the prescribed treatments and then disseminate this information to other trusts?
– No.
4. How many times has it been accessed by clinicians to support their work?
– NHS England is not aware as to whether NHS Arden and GEM Commissioning Support Unit, who manage the registry, monitors this.
5. Are clinicians able to access the registry as a whole, or just their own trust’s records?
– NHS England’s recommendation to NHS Arden and GEM Commissioning Support Unit is that the platform should permit clinicians to access information across all NHS Trusts, and not just their own.
6. Does this registry include information from private sector patients, and is it available to researchers or journalists who may be interested in seeing how medical cannabis is benefiting patients?
– No.
Section 22 (why some information was not disclosed)
The information you have requested is exempt from disclosure under Section 22 of the Freedom of Information Act (FOIA). There is a clear intention to publish the information at a future date and in line with section 22 it is considered reasonable in all the circumstances that the information should be withheld from disclosure until the date of publication. Further information on section 22 can be found at the following link:
https://www.legislation.gov.uk/ukpga/2000/36/section/22
Public Interest Test
To use this exemption, we are required to undertake a public interest test. The matters which were considered in applying the public interest test are as follows:
Factors in favour of disclosure:
Disclosure of the information supports the general public interest in the transparency, accountability and general understanding of the delivery of public services.
Factors in favour of withholding:
The data requires analysing and formatting alongside other elements of the report, before it is ready for wider reporting.
Early disclosure of unvalidated information will lead to confusion and potential allegations of lack of transparency if the published data varies to the unvalidated information released in response to an FOI
Early publication or release would be likely to result in the inclusion of errors, inaccurate and incomplete information. This would make the information of less value to those looking at it
Premature disclosure would lead to NHS England, and the wider health sector, to divert its existing resources in addressing queries which is not beneficial as there is already a plan in place to publish this information in due course.
Releasing information intended for publication ahead of its planned publication date could lead to disruption of the communications plan and put duplicated or inaccurate information within the public domain. This would or is likely to be misleading to those viewing the information.
The post ‘Valuable’ UK Medical Cannabis Data to be Published After A Four Year Delay appeared first on Business of Cannabis.
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The years of obfuscation and delay prompted a Freedom of Information request by Business of Cannabis, which has established that the NHS will publish data from its ‘registry’ by the ‘end of the year’.
However, from our industry soundings – and despite its four-year gestation – it is still unclear whether the UK registry, currently, even exists in a usable form.
And, there is speculation as to whether the six-month window will allow the NHS time to assimilate the relevant data.
During our investigations into the workings of the registry it became clear that the two organisations tasked with its delivery were more concerned with back-heeling responsibility to the other, than supporting patients.
Those with knowledge of the workings of the NHS say that even now, four years down the line, the vast majority of prescribing medical cannabis consultants are unaware of the registry’s existence.
Nevertheless, for the NHS to eventually accept that it needs to fulfil the mandate it was given by the UK Government and acknowledge and monitor the role cannabis can play in a clinician’s toolkit is, in itself, a welcome development.
Does a register yet exist?
Professor Mike Barnes, Chairman of the Medical Cannabis Clinicians Society, believes the registry, as it was envisaged at the time of its 2021 launch, probably does not exist.
He said: “There are around 170 prescribing clinicians; I know most of them, and it is never talked about or discussed.
“Hopefully, they will tell us, openly by the end of year, what has happened, how many patients have been treated, and what they intend to do about making it a meaningful and helpful registry.
“By making it more accessible and available to clinicians it will be a more meaningful resource. Nevertheless this has been a missed opportunity to record some really helpful data over the last few years.”
Disappointingly, the registry will only cover the 1,000-or-so patients receiving the three NHS licensed medicines – Sativex, Epidyolex and Nabilone – and the six UK patients currently receiving ‘specials’, i.e. whole-plant formulations.
Pierre van Weperen, Managing Director of leading commercial cannabis supplier Grow Group UK, highlighted this flaw and stressed the need for the registry to include the private-prescription market in the UK, which supplies around 60,000 patients.
He said: “The registry only picks up NHS patients so that’s epilepsy and Multiple Sclerosis with Epidyolex and Sativex. I am not optimistic about the longer term data for epilepsy because we know that at some point these kids need at least a hint of THC.
“Sativex is prescribed off-label for pain and I would hope that they have captured this data.
“More importantly though, and this is the most interesting point, the NHS should open the registry for all patients who are using prescription medical cannabis.
“It would be the ideal way to capture data nationally and drive insights. I am sure that the clinics and patients would be happy to co-operate for the greater good.”
EXCLUSIVE: Almost two years since the launch of the NHS patient registry to collect data on cannabis-based medicines, Cannabis Health can reveal it is yet to enrol any patients.
Advocates are now calling for collaboration @Drug_Science @MEDCANSupporthttps://t.co/rQ3ETc1qWW
— CannabisHealth (@CannabisHnews) February 7, 2023
Sal Aziz, of PatientsCann UK, a medical cannabis patient network, who works in the NHS says many of the 200-plus NHS trusts are still not aware they can prescribe cannabis.
“I have spoken to many directors, at senior levels, in many trusts and they still say the NHS does not prescribe medical cannabis and we cannot talk about it as it exposes us to a reputational risk.
“My biggest worry with this register is that it will show that not many of the trusts have used it, and the ones who have will not have been very good at recording their prescribing activities.”
Mike Morgan-Giles, CEO of the UK Cannabis Industry Council welcomed the development, with caveats, saying: “It is positive that NHS England is moving forward with the Cannabis Patient Registry.
He added: ”Though the Cannabis Industry Council would like to see the registry expanded to include unlicensed CBPMs prescribed by private clinics.
“Alongside enabling e-prescribing, such a step would build an evidence base for the NHS, protect patient data and help ensure that patients are able to access the medications they need.”
Prof Barnes reflected on the missed opportunity of the last few years and questioned the veracity of the NHS’ approach to cannabis, saying: “If they had mandated a registry or even a more basic, observational collection of data which included the private sector, they would have accumulated a lot of fascinating and interesting data for future prescribing.
“To make the registry useful it needs to take into account the private sector which accounts for 99% of prescriptions. So, as presently constructed the registry will be next to useless.
“And, unfortunately, this once again illustrates the total lack of interest by NHS England in this valuable medicine. They have never had any interest, still don’t have interest, and the farce of this registry demonstrates this.”
UK Medical Cannabis Registry – A Story Of Ineptitude And Neglect
A 2019 NHS England and NHS Improvement report entitled ‘Barriers to accessing cannabis-based products for medicinal use on NHS prescription’ made a number of recommendations to support patient access.
One of these recommended that NHS England ‘should work with industry and academia to scope the development of a national UK patient registry to collect a uniform data set’.
The registry was launched in March 2021 with one of the UK’s largest health bodies, the NHS Arden and Greater East Midlands Commissioning Support Unit (CSU), chosen to ‘manage and host the patient registry’.
At the time of the launch Muhammed Vohra, project lead at the Arden & GEM, said: “By enabling the standardised collection of data for all patients being prescribed cannabis-based products our aim is to improve patient care through robust monitoring and evaluation.
Cannabis-derived medicinal products to be made available on prescription: https://t.co/lsgEyuIiai pic.twitter.com/d12DaZyyzI
— Home Office (@ukhomeoffice) July 26, 2018
“The registry supports clinical decisions to be taken, based on the latest guidance, so that we can keep patients safe while gaining better clinical evidence about the potential impact of these fairly recently rescheduled products.”
However, by late 2022 it became clear that the registry was not functioning as intended thus prompting the head of the NHS to write to all of its 200-plus trusts.
In a published letter Chief Professor Stephen Powis, National Medical Director of NHS England, and David Webb, NHS Chief Pharmaceutical Officer wrote to all trusts requesting that clinicians begin contributing to the registry.
It said: “NHS trusts should ensure that…all prescribers issuing prescriptions for CBPMs (Cannabis-based products for medicinal use) make relevant register entries and keep them up to date as soon as possible after prescriptions are issued.”
Covering Their Backs
At the start of May this year Business of Cannabis asked both NHS England and NHS Arden and Greater East Midlands for details on the performance of the registry.
They passed the buck, back-and-forth, with Arden & GEM persistent in saying that as the ‘data controller’ it is the responsibility of NHS England.
Whilst the NHS England press office repeatedly said that as the data is held at NHS Arden and Gem, it is its responsibility.
However NHS England – following a Freedom of Information request – has backtracked from its position telling Business of Cannabis it ‘‘commits to publish(ing) information on the NHS England website related to this question in due course by the end of 2025’ see below.
Below is a full transcript of our inquiries, and NHS England’s responses:
1. Can you inform as to how many of the 200-plus NHS Trusts are recording this data on the registry?
– NHS England is withholding this information under Section 22 of the FOIA. NHS England is currently reviewing NHS Arden and GEM Commissioning Support Unit’s management of the platform and commits to publish information on the NHS England website related to this question in due course by the end of 2025.
2. How many patients are recorded on the register?
– NHS England is withholding this information under Section 22 of the FOIA. NHS England is currently reviewing NHS Arden and GEM Commissioning Support Unit’s management of the platform and commits to publish information related to this question on the NHS England website by the end of 2025.
3. Does the NHS collate this data into a national patient registry and assimilate the data to determine the effectiveness of the prescribed treatments and then disseminate this information to other trusts?
– No.
4. How many times has it been accessed by clinicians to support their work?
– NHS England is not aware as to whether NHS Arden and GEM Commissioning Support Unit, who manage the registry, monitors this.
5. Are clinicians able to access the registry as a whole, or just their own trust’s records?
– NHS England’s recommendation to NHS Arden and GEM Commissioning Support Unit is that the platform should permit clinicians to access information across all NHS Trusts, and not just their own.
6. Does this registry include information from private sector patients, and is it available to researchers or journalists who may be interested in seeing how medical cannabis is benefiting patients?
– No.
Section 22 (why some information was not disclosed)
The information you have requested is exempt from disclosure under Section 22 of the Freedom of Information Act (FOIA). There is a clear intention to publish the information at a future date and in line with section 22 it is considered reasonable in all the circumstances that the information should be withheld from disclosure until the date of publication. Further information on section 22 can be found at the following link:
https://www.legislation.gov.uk/ukpga/2000/36/section/22
Public Interest Test
To use this exemption, we are required to undertake a public interest test. The matters which were considered in applying the public interest test are as follows:
Factors in favour of disclosure:
Disclosure of the information supports the general public interest in the transparency, accountability and general understanding of the delivery of public services.
Factors in favour of withholding:
The data requires analysing and formatting alongside other elements of the report, before it is ready for wider reporting.
Early disclosure of unvalidated information will lead to confusion and potential allegations of lack of transparency if the published data varies to the unvalidated information released in response to an FOI
Early publication or release would be likely to result in the inclusion of errors, inaccurate and incomplete information. This would make the information of less value to those looking at it
Premature disclosure would lead to NHS England, and the wider health sector, to divert its existing resources in addressing queries which is not beneficial as there is already a plan in place to publish this information in due course.
Releasing information intended for publication ahead of its planned publication date could lead to disruption of the communications plan and put duplicated or inaccurate information within the public domain. This would or is likely to be misleading to those viewing the information.
The post ‘Valuable’ UK Medical Cannabis Data to be Published After A Four Year Delay appeared first on Business of Cannabis.
Continue reading...
