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Thursday, 10 Feb 2022

Written Answers Nos. 378-393

Seized Property

Ceisteanna (378, 379)

Peadar Tóibín

Ceist:

378. Deputy Peadar Tóibín asked the Minister for Justice the total amount of assets and cash seized by the Criminal Assets Bureau in each of the past ten years and to date in 2022. [7292/22]

Amharc ar fhreagra

Peadar Tóibín

Ceist:

379. Deputy Peadar Tóibín asked the Minister for Justice the total amount returned to the Exchequer by the Criminal Assets Bureau in each of the past ten years and to date in 2022. [7293/22]

Amharc ar fhreagra

Freagraí scríofa

I propose to take Questions Nos. 378 and 379 together.

As the Deputy will be aware, the Criminal Assets Bureau (CAB) is a multi-agency statutory body established under the Criminal Assets Bureau Act, 1996. The Bureau has staff drawn from An Garda Síochána, the Office of the Revenue Commissioners (including Customs), the Department of Social Protection and my Department.

The Bureau’s remit is to target the assets, wherever situated, of persons which derive or are suspected to derive, directly or indirectly, from criminal conduct. Since its inception, the Bureau has been at the forefront of fighting organised crime in this jurisdiction – disrupting the activities of criminal gangs through the removal of their ill-gotten gains - and has been recognised as a world leader in asset investigations, tracing and forfeiture.

The Bureau works closely with Gardaí and all law enforcement agencies at national and international levels and continues to focus its efforts on targeting assets deriving from all types of criminal conduct. The Proceeds of Crime (Amendment) Act 2005 makes provision for the Bureau to seize assets that were generated in foreign jurisdictions. This Act enables the Bureau to cooperate fully with other international asset recovery agencies.

I am advised by the Bureau that figures for 2021 are not yet available pending publication of the CAB Annual Report for 2021. Similarly figures to date in 2022 are currently unavailable. For the Deputy's information the CAB Annual Reports are available to view at the following link:

www.cab.ie/annual-reports/

The table below, provided by CAB, indicates the total value of assets and cash seized by the Bureau for the years 2011-2020.

Year

Section 2 Interim Orders EURO

Section 2 Interim Orders STERLING

2011

5,384,559.73

6,725.00

2012

2,110,334.78

2013

2,821,302.00

2014

6,760,182.00

2015

941,078.59

2016

643,063.07

2017

7,020,539.20

2018

8,263,582.30

2019

64,985,550.30

2020

5,814,206.00

The table below sets out the total monies returned to the Exchequer under Section 4(1) & 4A of the Proceeds of Crime Act 1996. Also included are taxes collected and social welfare recoveries for the years 2011 – 2020 which are remitted to the Exchequer via the Office of the Revenue Commissioners and the Department of Social Protection.

Year

Total to Exchequer from Section 4(1) & 4A Proceed of Crime Act

Revenue Collections

Social Welfare Recoveries

2011

€2,734,715.22

€3,804,867.00

€454,037.49

2012

€4,850,540.17

€1,967,925.00

€393,797.00

2013

€1,038,680.52

€5,418,000.00

€287,380.00

2014

€467,152.37

€3,017,000.00

€335,911.00

2015

€1,642,962.29

€2,038,000.00

€185,354.32

2016

€1,412,920.41

€2,106,000.00

€297,430.12

2017

€1,698,721.08

€2,374,000.00

€319,720.31

2018

€2,271,799.92

€3,097,000.00

€302,673.36

2019

€1,559,726.31

€2,206,000.00

€324,055.73

2020

€1,838,507.25

€1,800,000.00

€314,484.60

Question No. 379 answered with Question No. 378.

Jury Service

Ceisteanna (380)

Catherine Murphy

Ceist:

380. Deputy Catherine Murphy asked the Minister for Justice the number of persons called to serve for jury service in the past five years to date; the number of persons that were excused from jury service for the rest of their lives for the same time period; and the number of persons that were called to jury service but were subsequently excused from serving due to conflicts of interest, general unsuitability and who were known to defendants over the same time period. [7294/22]

Amharc ar fhreagra

Freagraí scríofa

Under the provisions of the Courts Service Act 1998, management of the courts, including the provision of accommodation for court sittings, is the responsibility of the Courts Service, which is independent in exercising its functions.

However, in order to be of assistance to the Deputy, I have had enquiries made and the Courts Service has provided the following details in relation to the number of jury summonses issued in the past five years.

Table: The Number of Jury Summonses Issued 2017 – 2021

Year

Summonses Issued

2017

120,010

2018

128,965

2019

153,403

2020

189,047

2021

231,778

I am informed that the Courts Service are unable to provide information on the number of persons excused from jury service for the rest of their lives as this is not recorded on their system. Similarly the Courts Service are unable to provide information on the number of persons excused for the reasons of conflict of interest, general unsuitability or where the defendant was known to the potential jurors.

Jury Service

Ceisteanna (381)

Catherine Murphy

Ceist:

381. Deputy Catherine Murphy asked the Minister for Justice the number of instances over the past five years to date that members of a jury have reported to the Courts Service and or gardaí that they had been intimidated and or compromised before and or during a trial; and the number who reported same post-trial to the Courts Service and or gardaí over the same time period. [7295/22]

Amharc ar fhreagra

Freagraí scríofa

I have requested the information sought by the Deputy from An Garda Síochána, but I have not received this information in time. I will write to the Deputy as soon as the information is to hand.

The following deferred reply was received under Standing Order 51
I refer to Parliamentary Question No. 381 of 10 February 2022 where you sought:
“The number of instances over the past five years to date that members of a jury have reported to the Courts Service and or Gardaí that they had been intimidated and or compromised before and or during a trial; and the number who reported same post-trial to the Courts Service and or Gardaí over the same time period”.
As you will recall, I sought the information you requested from the Garda authorities and undertook to contact you again once the information was to hand.
Under the provisions of the Courts Service Act 1998, management of the courts is the responsibility of the Courts Service, which is independent in exercising its functions. I have no role in these matters.
I am informed that the Garda authorities hold information in relation to intimidation of witnesses/ jurors who assist in the investigation by An Garda Síochána of an offence; or where a witness / potential witness / juror / potential juror in proceedings for an offence with the intention of causing the investigation / the course of justice to be obstructed, perverted or interfered with.
I am advised by the Garda authorities that the table below sets out the number of proceedings and convictions where intimidation of a witness/ juror was reported.
I am informed that the Garda authorities are able to breakdown this information by offence code only, and cannot isolate incidents related to jurors only as a result.

Year

Proceedings

Convictions

2017

38

9

2018

29

11

2019

43

13

2020

48

11

2021

45

4

2022

7

0

*Statistics provided are Provisional, Operational and Liable to Change*
I hope that this information is of assistance.

Electric Vehicles

Ceisteanna (382)

Paul Kehoe

Ceist:

382. Deputy Paul Kehoe asked the Minister for Justice when charging points for electric vehicles will be installed in Mountjoy Prison for employees of the Irish Prison Service; and if she will make a statement on the matter. [7351/22]

Amharc ar fhreagra

Freagraí scríofa

I can advise the Deputy that the Irish Prison Service will shortly commence a trial of two electric vehicles to determine their suitability for Irish Prison Service fleet use.

The vehicles will be located in Shelton Abbey and in the Prison Service Escort Corp Headquarters at Cloverhill Prison.

The Irish Prison Service will install electric vehicle charging points at these locations to support this trial and if deemed viable will commence electric vehicle purchases from 2023.

The Irish Prison Service also intends to install a charging point for electric vehicles for staff use within the prison estate in 2022, again on a trial basis, and at a location to be determined based on suitability. If successful consideration will be given to the installation of further charging points.

Electric Vehicles

Ceisteanna (383)

Paul Kehoe

Ceist:

383. Deputy Paul Kehoe asked the Minister for Justice the number of electric vehicle charging points that are available for use by staff across all carparks provided for use by her Department throughout the country; and if she will make a statement on the matter. [7386/22]

Amharc ar fhreagra

Freagraí scríofa

Justice Plan 2021 commits to fully aligning the actions and activities of the justice sector to the climate ambition in the programme for government.

By cutting our reliance on carbon and by implementing climate action policies in areas such as fleet and estate management, as well as green public procurement and energy efficiency, we can lead by example in the drive across Irish society to meet our climate change commitments. This can also encourage others to adopt practices that minimise their environmental impact and maximise community benefit.

I wish to advise the Deputy that there are currently no electric vehicle charging points available in the carparks provided for use by staff. My Department however, is fully committed to enhancing the Organisation's capacity to support our commitments on climate change and as part of that I am informed that there are plans to install 2 electric vehicle charging points in the carpark of 51 St. Stephen's Green, and 2 electric vehicle charging points in the carpark of the Hanover Street office this year. We will continue to install charging points as appropriate and also encourage the use of public transport as an alternative to use of private cars.

Laboratory Facilities

Ceisteanna (384)

Patricia Ryan

Ceist:

384. Deputy Patricia Ryan asked the Minister for Justice if her attention has been drawn to the fact that delays in the testing of drugs at the State Laboratory is jeopardising court cases; her plans to address these delays; and if she will make a statement on the matter. [7402/22]

Amharc ar fhreagra

Freagraí scríofa

As the Deputy will be aware, Forensic Science Ireland (FSI) provides comprehensive scientific analysis, independent expert opinion, advice and training to support the Irish Criminal Justice system.

FSI analyses submissions from a wide variety of cases including murders, significant drug seizures, aggravated assaults, suspected explosive devices and sexual assaults, and presents findings as expert witnesses in court. Specifically for drugs offences, FSI conducts laboratory testing and issues scientific reports for cases prosecuted under the Misuse of Drugs Act. This service is provided for Section 15 (possession with intent to supply), Section 17 (cultivation) and Section 3 (simple possession) cases as defined within the Misuse of Drugs Act.

The Deputy will appreciate that, as with forensic Institutes in other jurisdictions, case submissions have increased in FSI over several years. Between 2018 and 2021, case submissions for Drugs and Toxicology increased by 23%. Drug submissions in 2020 were particularly high. This flows from the focused efforts of An Garda Síochána around the country to disrupt the supply and distribution of controlled substances.

To manage this demand, I am advised that FSI and An Garda Síochána have established an agreed prioritisation system for forensic work and this is represented in a comprehensive Service Level Agreement. This calls on FSI to focus on the most important cases and prioritise resources accordingly. This practice is common across forensic organisations in Europe. Cases are prioritised on the basis of when the Court Date for the drugs offence is scheduled. For urgent cases (for example, where a suspect is in custody) FSI provides a verbal report within 24 hours.

FSI has increased its drug testing capacity over the past 6 months after refurbishment of laboratory spaces and recruitment of additional staff and is systematically reducing its backlog of drugs cases based on agreed prioritisation criteria with An Garda Síochána.

To support its work the current funding allocated to the FSI increased by €9.6m between 2019 and 2021, representing a very significant 79% increase in its resources.

In addition, FSI plans to transition to a new purpose-built facility at the Backweston Science Campus in the second half of this year. This is a major capital investment, with a project cost of €99.5m. The new facility will provide best practice standards for evidence processing, analysis and storage, and will enable growth in the capability and capacity of forensic services in Ireland. The move to the new facility is further supported by the provision of additional current funding of €6.6m in 2022 allocation much of which is focused on assisting the transition process and procuring new equipment.

Industrial Disputes

Ceisteanna (385)

Róisín Shortall

Ceist:

385. Deputy Róisín Shortall asked the Minister for Health if he will address matters raised in correspondence (details supplied); his views on the planned industrial action; the rationale for his refusal to sanction new measures; the reason for instructing the HSE not to attend the Labour Court; and if he will make a statement on the matter. [7316/22]

Amharc ar fhreagra

Freagraí scríofa

As you may be aware, the current Public Service Agreement, Building Momentum, includes the process of Sectoral Bargaining. The purpose of the Sectoral Bargaining Fund process is to deal with outstanding adjudications, commitments, recommendations, awards and claims within the terms of the Fund and within the Exchequer funding limit in place.

Health Management remains committed to implement an agreement agreed through the WRC process in 2020. However, when Building Momentum came into effect in January 2021, all outstanding agreements became subject to Sectoral Bargaining. Failure to work through the mechanisms of Building Momentum would undermine the PSA and would be unfair to other unions who have adhered to the terms of the agreement.

Building Momentum, to which Fórsa are signatory, outlines that all parties are committed to participation in the dispute resolution procedures set out in the agreement. All parties encompassed by Building Momentum have also agreed that, notwithstanding their continuing right to access the Labour Court/Conciliation and Arbitration Scheme, this shall only be utilised after the dispute resolution processes outlined in the Agreement, have been fully exhausted.

The delivery of industrial peace is an essential requirement of this Agreement. Accordingly, all forms of industrial action are precluded.

The Department of Health and the HSE remain open to engagement with Fórsa but are compelled to resolve any disputes in compliance with the provisions allowed for under Building Momentum.

Covid-19 Pandemic Supports

Ceisteanna (386)

Patricia Ryan

Ceist:

386. Deputy Patricia Ryan asked the Minister for Health if he will ensure the pandemic bonus payment will be paid to workers in organisations funded under section 38 of the Health Act 2004; and if he will make a statement on the matter. [7399/22]

Amharc ar fhreagra

Freagraí scríofa

Firstly I would like to extend my sincere gratitude to all healthcare workers for their efforts during this most challenging period.

In recognition of the efforts of the general public, volunteers and all workers during the COVID-19 pandemic and in remembrance of people who lost their lives due to the COVID-19 pandemic, on Wednesday 19 January, the Government announced a once-off public holiday will take place on Friday 18 March 2022.

The Government also announced COVID-19 recognition payment for frontline public sector healthcare workers, to recognise their unique role during the pandemic. The payment of €1,000 will not be subject to income tax, USC, or PRSI. The measure will be ring fenced to staff ordinarily onsite in COVID-19 exposed healthcare environments within the period between 1 March 2020 and 30 June 2021.

Those public sector frontline healthcare workers eligible for the payment will be directly employed public health sector staff (including Section 38s) working in clinical settings. A pro-rata arrangement will apply for eligible part time staff / equivalents and supernumerary students who were required to perform training in clinical sites.

The Department of Health will also introduce a measure for making a similar payment to staff in private sector nursing homes and hospices that were affected by Covid-19.

I would like to assure the Deputy that work is underway to ensure fairness in the application of this measure as the Government intended.

The cost of providing a recognition payment of €1,000 to all eligible public servants working in the health and ambulance services depends on the number of staff who are eligible for the payment. If there were 100,000 WTE deemed eligible, the estimated cost would be approximately €100 million. This figure of 100,000 WTE represents approximately 75% of the HSE/Section 38 workforce and would be the minimum expected to be eligible for this recognition payment.

Similarly, the cost of providing an equivalent recognition payment to relevant staff in private sector nursing homes and hospices affected by Covid-19 depends on the number of staff deemed eligible for the payment. The estimated cost set out above does not include the cost in respect of nursing homes and Defence Forces staff. This measure will exclude all private sector health workers except those working in nursing homes and hospices affected by Covid-19. This measure, including costings, will be progressed by the Department of Health.

The Department and the HSE are currently engaging in finalising arrangements to give effect to the Government announcement concerning the Recognition Payment. Full particulars, eligibility and terms and conditions that apply to this payment shall be made available shortly. It is important that this measure is applied fairly as intended and I welcome the work that is ongoing to ensure this is so.

Covid-19 Pandemic Supports

Ceisteanna (387)

Patricia Ryan

Ceist:

387. Deputy Patricia Ryan asked the Minister for Health if he will ensure the pandemic bonus payment will be paid to workers in organisations funded under section 39 of the Health Act 2004; and if he will make a statement on the matter. [7400/22]

Amharc ar fhreagra

Freagraí scríofa

Firstly I would like to extend my sincere gratitude to all healthcare workers for their efforts during this most challenging period.

In recognition of the efforts of the general public, volunteers and all workers during the COVID-19 pandemic and in remembrance of people who lost their lives due to the COVID-19 pandemic, on Wednesday 19 January, the Government announced a once-off public holiday will take place on Friday 18 March 2022.

The Government also announced COVID-19 recognition payment for frontline public sector healthcare workers, to recognise their unique role during the pandemic. The payment of €1,000 will not be subject to income tax, USC, or PRSI. The measure will be ring fenced to staff ordinarily onsite in COVID-19 exposed healthcare environments within the period between 1 March 2020 and 30 June 2021.

Those public sector frontline healthcare workers eligible for the payment will be directly employed public health sector staff working in clinical settings. A pro-rata arrangement will apply for eligible part time staff / equivalents and supernumerary students who were required to perform training in clinical sites.

The Department of Health will also introduce a measure for making a similar payment to staff in private sector nursing homes and hospices (and this covers whether those facilities are private, voluntary or section 39 etc.) that were affected by Covid-19.

I would like to assure the Deputy that work is underway to ensure fairness in the application of this measure as the Government intended.

The cost of providing a recognition payment of €1,000 to all eligible public servants working in the health and ambulance services depends on the number of staff who are eligible for the payment. If there were 100,000 WTE deemed eligible, the estimated cost would be approximately €100 million. This figure of 100,000 WTE represents approximately 75% of the HSE/Section 38 workforce and would be the minimum expected to be eligible for this recognition payment.

Similarly, the cost of providing an equivalent recognition payment to relevant staff in private sector nursing homes and hospices affected by Covid-19 depends on the number of staff deemed eligible for the payment. The estimated cost set out above does not include the cost in respect of nursing homes and Defence Forces staff. This measure, including costings, will be progressed by the Department of Health.

The Department and the HSE are currently engaging in finalising arrangements to give effect to the Government announcement concerning the Recognition Payment. Full particulars, eligibility and terms and conditions that apply to this payment shall be made available shortly. It is important that this measure is applied fairly as intended and I welcome the work that is ongoing to ensure this is so.

I am also mindful of other workers who played their own part during this difficult period in sustaining our health service but did not work in such exposed areas. It is tough to draw a line on this matter, but the Government based its decision on the risks which frontline healthcare workers faced.

Covid-19 Pandemic Supports

Ceisteanna (388)

Michael Lowry

Ceist:

388. Deputy Michael Lowry asked the Minister for Health if he will approve the inclusion of workers who are employed in an adult disability service provider (details supplied) in the Covid recognition payment; and if he will make a statement on the matter. [7123/22]

Amharc ar fhreagra

Freagraí scríofa

Firstly I would like to extend my sincere gratitude to all healthcare workers for their efforts during this most challenging period.

In recognition of the efforts of the general public, volunteers and all workers during the COVID-19 pandemic and in remembrance of people who lost their lives due to the COVID-19 pandemic, on Wednesday 19 January, the Government announced a once-off public holiday will take place on Friday 18 March 2022.

The Government also announced COVID-19 recognition payment for frontline public sector healthcare workers, to recognise their unique role during the pandemic. The payment of €1,000 will not be subject to income tax, USC, or PRSI. The measure will be ring fenced to staff ordinarily onsite in COVID-19 exposed healthcare environments within the period between 1 March 2020 and 30 June 2021.

Those public sector frontline healthcare workers eligible for the payment will be directly employed public health sector staff working in clinical settings. A pro-rata arrangement will apply for eligible part time staff / equivalents and supernumerary students who were required to perform training in clinical sites.

The Department of Health will also introduce a measure for making a similar payment to staff in private sector nursing homes and hospices that were affected by Covid-19.

I would like to assure the Deputy that work is underway to ensure fairness in the application of this measure as the Government intended.

The cost of providing a recognition payment of €1,000 to all eligible public servants working in the health and ambulance services depends on the number of staff who are eligible for the payment. If there were 100,000 WTE deemed eligible, the estimated cost would be approximately €100 million. This figure of 100,000 WTE represents approximately 75% of the HSE/Section 38 workforce and would be the minimum expected to be eligible for this recognition payment.

Similarly, the cost of providing an equivalent recognition payment to relevant staff in private sector nursing homes and hospices affected by Covid-19 depends on the number of staff deemed eligible for the payment. The estimated cost set out above does not include the cost in respect of nursing homes and Defence Forces staff. This measure, including costings, will be progressed by the Department of Health.

The Department and the HSE are currently engaging in finalising arrangements to give effect to the Government announcement concerning the Recognition Payment. Full particulars, eligibility and terms and conditions that apply to this payment shall be made available shortly. It is important that this measure is applied fairly as intended and I welcome the work that is ongoing to ensure this is so.

Health Services

Ceisteanna (389)

Michael Lowry

Ceist:

389. Deputy Michael Lowry asked the Minister for Health if he will request the HSE to issue guidance advising general practitioners and other medical practitioners that graded exercise is no longer recommended for ME/CFS patients (details supplied); and if he will make a statement on the matter. [7124/22]

Amharc ar fhreagra

Freagraí scríofa

As this is a service matter, I have asked the Health Service Executive to respond to the Deputy directly, as soon as possible.

Healthcare Policy

Ceisteanna (390)

Colm Burke

Ceist:

390. Deputy Colm Burke asked the Minister for Health the actions that are being taken to ensure that patients and carers are involved in the health technology appraisal process of new treatments for rare diseases; and if he will make a statement on the matter. [7126/22]

Amharc ar fhreagra

Freagraí scríofa

Health technology assessment (HTA) is a multidisciplinary process that summarises information about the medical, social, economic, and ethical issues related to the use of a health technology. Examples of health technologies include medicinal products, medical equipment, diagnostic and treatment methods, rehabilitation, and prevention methods. Its aim is to inform the formulation of safe and effective health policies, investment and reimbursement decisions that are patient focused and seek to achieve best value.

The National Centre for Pharmacoeconomics (NCPE) and the Health Information and Quality Authority (HIQA) are the two agencies primarily responsible for the undertaking of HTA in Ireland. The NCPE assesses medicines for reimbursement. HIQA conducts HTAs to inform national health policy and national health service decisions at the request of the Minister for Health and the HSE.

The National Centre for Pharmacoeconomics and HTA for rare diseases

The National Centre for Pharmacoeconomics (NCPE) are committed to transparency in their work and clear communication to all stakeholders. They have provided a submission process for Patient Organisations since 2016 and undertook a major review of the process in 2018. This review included a public consultation with Patient Organisations.

The Patient Organisation Submission of Evidence Template is a document that enables patient organisations to provide patient and carer input to the assessment of a particular medicine. The purpose of the submission is to identify important aspects of the medicine that are:

- not identified or well presented in the published literature, or

- not well captured in quality of life measures or other outcome measures that have been used in clinical trials and other research studies, or

- not well known and/or understood by experts in HTA and decision makers

The submission is also an opportunity to identify the priorities and preferences of patients and what the added value of a particular medicine may be to them. This information is then used as part of the HTA of the medicine.

Since the current Patient Organisation Submission Process was launched in 2018, the proportion of HTAs for orphan drugs where patient organisation submissions were received has increased every year. The NCPE currently have seven ongoing HTAs for drug treatments for rare diseases/orphan indications. A patient organisation submission has been submitted or is planned for all seven of these HTAs.

To support this process, the NCPE deliver a 10-week long patient education module annually, in conjunction with the Irish Platform for Patients' Organisations, Science & Industry (IPPOSI), entitled “Understanding the Principles and Practices of Health Technology Assessment”. This aims to equip patients and their representatives with the background information and knowledge to actively participate in HTA decision making processes in Ireland.

The NCPE also provide ongoing support to patients and organisations throughout the submission process, particularly focusing on smaller or less experienced organisations with fewer resources available to facilitate participation in the process.

The NCPE have also created a dedicated section on their website for patients, which includes information on the submission process, the drug reimbursement process and how to interpret NCPE recommendations. Updates on the NCPE website in respect of all steps in the HTA process are provided in real time from the date the rapid review is commissioned.

In 2019, the NCPE also engaged the National Adult Literacy Agency (NALA) to co-design Plain English summaries of full HTA reports, which detail the recommendation and next steps in the reimbursement process.

HIQA

HIQA undertakes health technology assessments of other healthcare interventions and healthcare programmes, which may include interventions or procedures to screen for, diagnose or treat rare diseases. HIQA constitutes an expert advisory group (EAG) with a multidisciplinary membership, including relevant patient and public representation, to provide expert input to each health technology assessment. EAG members participate in regular meetings throughout the process, and review the draft HTA report and HIQA’s associated advice.

The Rare Diseases Technology Review Committee

In 2018, the Rare Diseases Technology Review Committee (RDTRC) was introduced by HSE Leadership (as recommended by the National Rare Disease Plan for Ireland) with responsibility for:

- Reviewing proposals received from industry or expert groups in Ireland for funding of new products for rare diseases, or expanded indications for existing products for rare diseases and making recommendations as to the implementation of the relevant recommendations from the National Rare Diseases Plan.

- Providing contributions to the development of clinical guidelines for relevant Orphan Medicinal Products (OMPs) and supporting the implementation of guidelines in conjunction with the National Drugs Management Programme Office where applicable.

The RDTRC facilitates the input of patient and clinician perspectives and assist the Drugs Group in its reimbursement recommendations to the HSE EMT. The RDTRC complements the existing process in the case of orphan medicines, rather than replacing any of its stages.

Healthcare Policy

Ceisteanna (391)

Colm Burke

Ceist:

391. Deputy Colm Burke asked the Minister for Health if he has made an assessment of the impact of the Patient Organisation Submission Process in the National Centre for Pharmacoeconomics in achieving its aims of improving patient involvement in the health technology appraisal process; and if he will make a statement on the matter. [7127/22]

Amharc ar fhreagra

Freagraí scríofa

The National Centre for Pharmacoeconomics (NCPE) are committed to transparency in their work and to clear communication to all stakeholders. They have provided a submission process for Patient Organisations since 2016 and undertook a major review of the process in 2018. This review included a public consultation with Patient Organisations.

The Patient Organisation Submission of Evidence Template is a document that enables patient organisations to provide patient and carer input to the assessment of a particular medicine. The purpose of the submission is to identify important aspects of the medicine that are:

- not identified or well presented in the published literature; or

- not well captured in quality-of-life measures or other outcome measures that have been used in clinical trials and other research studies; or

- not well known and/or understood by experts in HTA and decision makers.

The submission is also an opportunity to identify the priorities and preferences of patients and what the added value of a particular medicine may be to them. This information is then used as part of the HTA of the medicine.

Since the current Patient Organisation Submission Process was launched in 2018, the proportion of HTAs for orphan drugs where patient organisation submissions were received has increased every year. The NCPE advise that it currently has seven ongoing HTAs for drug treatments for rare diseases/orphan indications. A patient organisation submission has been submitted or is planned for all seven of these HTAs.

To support this process, the NCPE deliver a 10-week long patient education module annually, in conjunction with the Irish Platform for Patients' Organisations, Science & Industry (IPPOSI), entitled “Understanding the Principles and Practices of Health Technology Assessment”. This aims to equip patients and their representatives with the background information and knowledge to actively participate in HTA decision making processes in Ireland.

The NCPE also provide ongoing support to patients and organisations throughout the submission process, particularly focusing on smaller or less experienced organisations with fewer resources available to facilitate participation in the process.

The NCPE have also created a dedicated section on their website for patients, which includes information on the submission process, the drug reimbursement process and how to interpret NCPE recommendations. Updates on the NCPE website in respect of all steps in the HTA process are provided in real time from the date the rapid review is commissioned.

In 2019, the NCPE also engaged the National Adult Literacy Agency (NALA) to co-design Plain English summaries of full HTA reports, which detail the recommendation and next steps in the reimbursement process.

Disease Management

Ceisteanna (392, 393)

Colm Burke

Ceist:

392. Deputy Colm Burke asked the Minister for Health the actions that have been taken to develop rare disease data registries; and if he will make a statement on the matter. [7128/22]

Amharc ar fhreagra

Colm Burke

Ceist:

393. Deputy Colm Burke asked the Minister for Health the progress that has been made on an all-Ireland network of rare disease registries as called for in the National Rare Disease Plan for Ireland 2014-2018; and if he will make a statement on the matter. [7129/22]

Amharc ar fhreagra

Freagraí scríofa

I propose to take Questions Nos. 392 and 393 together.

The Department is currently preparing a Memo for Government for approval-in-principal of a Health Information Bill, to improve the care people receive, their outcomes and the well-being of the population by ensuring high quality information is available to the public, health and social care professional, researchers and policymakers.

Included in the design of this Bill is a provision to enable the operation of disease-specific “virtual registries”, where information on disease diagnoses and treatment from healthcare providers are efficiently collated, combined and quality-checked from administrative records to create a database akin to an active registry for each disease. This will greatly improve the potential to monitor rare-disease prevalence in Ireland.

Question No. 393 answered with Question No. 392.
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