SARCOIDOSISUK PATIENT COUNCIL

The SarcoidosisUK Patient Council is a group of trusted sarcoidosis patients and their carers who help to inform, develop and advance a wide range of sarcoidosis research. Find out more below and complete the form at the bottom of the page to apply.

Thanks in part to the work of SarcoidosisUK, there is an increasing amount of research taking place into sarcoidosis. The ‘sarcoidosis public’ are crucial to this research and, by extension, to the better treatments, care and services that the research will provide. The SarcoidosisUK Patient Council is a new initiative to better enable patients and their families and carers get involved and make a real difference with sarcoidosis research.

What Do We Mean by the ‘Sarcoidosis Public’?

The term ‘sarcoidosis public’ includes sarcoidosis patients (including those awaiting diagnosis and in remission), their carers, their friends and family members and anyone else who uses health and social care services in relation to sarcoidosis. It may also include a limited number of people from organisations that represent sarcoidosis patients (such as SarcoidosisUK).

Where Does the SarcoidosisUK Patient Council Come In?

The SarcoidosisUK Patient Council will be formed of volunteers who nominate themselves and are then selected by SarcoidosisUK. They will form a trusted group from the sarcoidosis public who have a diverse range of opinions, needs and experiences. SarcoidosisUK will call upon the members to engage in research projects. If necessary the council may meet together or communicate via conference call. For more details about how the Patient Council will work, please read the SarcoidosisUK Patient Council Member Agreement below.

What Kind of Research Can the SarcoidosisUK Patient Council Get Involved With?

There are many different types of research that the Patient Council may be involved in. Some smaller projects will require only 5 minutes, for example completing an online survey. Others will be much longer projects that involve a higher level of commitment and involvement, perhaps lasting years. Research projects will be led by SarcoidosisUK or one of our trusted research partners.

They may include patients:

  • participating in research (this could be clinical, epidemiological, demographic, sociological or other types of research)
  • offering advice and opinions as members of a steering or focus group
  • commenting on and/or developing research materials or studies
  • commenting on and/or developing patient information materials
  • advising SarcoidosisUK and other research bodies on what research should be prioritised and funded
  • acting as patient ambassadors in interactions with healthcare decision makers and local and regional NHS providers

Why is the SarcoidosisUK Patient Council Important?

There is an important distinction to be made between the perspectives of the sarcoidosis public and the perspectives of people who have a professional role in sarcoidosis health and social care services such as clinicians, healthcare commissioners, academics and politicians. The patient voice matters the most. Unfortunately this is often drowned out by the various agendas of decision makers who have no personal connection to, or experience of living with, sarcoidosis. The SarcoidosisUK Patient Council will bridge this gap to give an authoritative voice to the sarcoidosis public. It will ensure that patients are as involved as possible in the decisions impacting the healthcare and research that directly affects their care and lives.

Will the Patient Council Receive any Training?

SarcoidosisUK have teamed up with the European Lung Foundation (ELF) to offer their European Patient Ambassador Programme (EPAP) course to all Patient Council members. This is a free online course that will equip members with the skills and knowledge they need to become effective patient representatives. The course takes around 10 hours to complete and has 11 modules including ‘Supporting Research and Development’ and ‘Improving Treatment and Care’. Through taking the programme, students will be able join an online community of ambassadors where they can discuss shared experiences and receive information on opportunities to influence healthcare activities. Taking the EPAP course is encouraged but is not a mandatory requirement to apply for the Patient Council.

Find out more about EPAP here. You can register for the EPAP course here.

Next Steps

Interested? If you would like to apply to be part of the SarcoidosisUK Patient Council, please read the Member Agreement and Data Protection Policy and then fill in the form below. Once your application has been received we will get back to you with a response and more details on current research projects as soon as possible.

Read the SarcoidosisUK Patient Council Members’ Agreement.
Read the SarcoidosisUK Research Participants’ Data Protection and Privacy Policy.

 

If you have questions and would like to find out more before you apply, please get in touch.

Apply to the SarcoidosisUK Patient Council

I have read and understood the SarcoidosisUK Patient Council Member Agreement (above)

I have read and understood the SarcoidosisUK Research Particpants' Data Protection and Privacy Policy (above)

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