2021 Citizens’ Jury Now Open for Applications!

January 11th, 2021

2021 Citizens’ Jury Now Open for Applications!

Dear Members,

On Jan 7th, 2021, IPPOSI has launched a campaign to identify and recruit 25 members of the public, broadly representative of the Irish population, willing to step up as members of a Citizens’ Jury to deliberate on the matter of Access to Health Information.

Health information can be valuable for making decisions about individual care, but also for managing the future of health services more broadly. Health leaders, researchers and companies are all keen to have access to this information. But this is information about people, and those people should have a say in how it is viewed, shared and used. This jury aims to let you have your say! We invite you to apply using the link below.

IPPOSI will recruit a cross-section of 25 adults from different communities to meet online in April 2021 to hear from and ask questions of experts, and to deliberate. The jury findings and recommendations will be presented to Irish policy makers as they work to advance Irish health information legislation as well as the development of a national Electronic Health Record.

Jury Details:

  • Applications open: 7th January, 2021
  • Applications close: Sunday 31st January, 2021
  • Applicants must be 18 years of age and living in Ireland
  • Jurors will receive €400 for their participation
  • Jury will take place online, April 2021
  • The jury is overseen by a multi-stakeholder oversight panel, and is supported by a number of IPPOSI academic and industry member organisations.
  • See full details here.

For Dr. Derick Mitchell, CEO of IPPOSI, this 2021 Citizens’ Jury represents an important milestone in IPPOSI’s evolution, one which requires the support of IPPOSI member organisations across patient, science, industry and further afield, to ensure its success:

“Thanks to our ever-growing membership, and under our strategy (2021-2024), IPPOSI is delivering initiatives that focus on harnessing public/citizen voices.  This ‘pilot’ jury, never conducted before in Ireland, will set the example whereby IPPOSI can run future juries, working with a number of relevant stakeholders to address ‘tricky health topics’ in the Irish health environment.  We are asking all our members to help ‘spread the word’ about this opportunity to as many people as possible through your own channels and networks.  The more people that apply, the more representative the 25 jurors will be, and the more relevant the outcomes will be to health policy makers in Ireland’.

If you have any questions please contact jmoran@ipposi.ie

APPLY HERE
Share Now:

Categories: News

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified