Being an R2P2 research partner

People involved with our research projects as research partners need to be enthusiastic and able to engage with both researchers, members of the general public and (fellow) patients. You don’t have to have Rheumatoid Arthritis, Sjögren’s Syndrome or any other long-term illness. You should however be an able communicator, have an interest in contributing to the research process, learning about the research and have sufficient time to spare. On this page, you will find more information on the kinds of tasks you might be asked to do, the time involved and payment of out-of-pocket expenses. If you are interested to learn more, please contact Dr Marie Falahee, Dr Gwenda Simons or Becky Birch.

Obviously this will vary from project to project and we encourage you to have a look at the information available for each project you think you might be interested in, but patient and public involvement will support for instance:

• Recruitment and consent - you will contribute to the development of participant information sheets and where possible will act as a patient contact for the project
• Interpretation of findings – through the development of recommendations for practice and patient information leaflets (top-tip leaflets).
• Dissemination of the findings through patient networks such as the National Rheumatoid Arthritis Society or charities to support patients with Sjögren’s Syndrome.
• Supporting the development of information for the R2P2 website

This varies from task to task and from project to project. Attending a meeting might take 2-3 hours (plus travel time), and meetings might take place 3-4 times a year. Providing feedback on a participant information sheet on the other hand might take an hour and can be done via email. When a researcher invites you to be involved with a project or a certain task which they think might be of interest to you, they will generally give you an indication of how long they think it will take.

We hope that being involved in research and having an important role in its development, execution and dissemination is a rewarding and exciting learning opportunity for you. We don’t want you to be out of pocket when you attend one of the project meetings or engage in other activities and in general, reimbursement for members’ involvement is intended to meet their out-of-pocket expenses (including travel costs) as well as reflecting the time and effort for involvement. However, since different projects are funded through different sources, the rate at which panel members can be reimbursed will vary from project to project. Where possible we will give you an indication of what payments & reimbursements to expect in our initial invitation to take part in the project. The researcher, who is responsible for the project you are involved in or would like to be involved in, should also be able to tell you more before you get engaged in any activities.

It is important for you to know that payments might lead to a reduction in certain benefits and you might be liable to pay tax. As this is completely depended on your personal situation, it is your own responsibility to check if this is the case.

The National Institute for Health Research (NIHR) have excellent resources for both researchers and the public. Specific information about payment can be found here.

The coordinators at R2P2 or the researcher(s) in charge of your project will of course help you wherever possible and can give you print-outs or booklets of the relevant information as well.

If you are new to being a patient research partner or even if you are an old-hand, you might find the following online programme useful:

The European Patient Ambassador Programme, a free patient online self-learning tool for people affected by chronic conditions, covering modules ranging from becoming better informed, how research works and how to get involved to attending healthcare conferences.

It’s a free resource that many patients already find useful.

Please find below a glossary of terms you might come across in your role as patient research partner. This glossary was originally developed for the EuroTEAM project but is useful in a whole host of projects. We will aim to update it with additional terms in the near future.

Acetylation

Protein modification

ACPA - Anti-Citrullinated Protein Antibodies

These antibodies bind proteins which contain citrulline. Patients with ACPA tend to have RA (though not all RA patients have ACPA)

Allele

One of a number of alternative forms of the same gene

ALS - Ankylosing Spondylitis

Chronic arthritis of the spine

Anti-CARP antibodies – Anti Carbamylated Protein

An autoantibody against carbamylated proteins, which can present itself years before RA is diagnosed

Anti-CCP - cyclic citrullinated peptides

Used to detect ACPA in serum / plasma

Antigen

A substance which causes the immune system to produce antibodies

Arthralgia

Joint pain

Assays

An investigative procedure conducted in a laboratory setting

Autoantibodies

Antibodies that attack healthy tissue

BAL – Bronchoalveolar lavage

A medical procedure where fluid is squirted into the lungs and collected for testing / examination

Ca-FCS – Carbamylated fetal calf serum

Blood that remains after clotting has taken place

Carbamylation

An acidic reaction, producing ureas, or carbamides

Chip typing

A method of analysing proteins in DNA

Chrondrocytes

Healthy cells, found in cartilage

Citrulline

An amino acid, often detectable in the antibodies of RA patients

Cognitive behavioural strategies

A talking therapy that helps individuals to overcome difficulties by encouraging changes in the way they think and behave

Cortical bone

The exterior of a bone

Cytokines

Cell signalling proteins

Cytomtry

A method of measuring parameters / numbers of cells

DMARD – Disease Modifying Anti-Rheumatic Drugs

Such as methotrexate

Down regulation

A decrease of a cellular component

Epigenetics

The study of factors which control gene expression and which can be inherited as cells divide. These include factors which bind tightly to the DNA sequence and determine whether the DNA is turned on or off.

Epitope

Part of an antigen recognised by the immune system

Exome sequencing

A method of sequencing long DNA strands

EULAR

The European League Against Rheumatism (www.eular.org)

EULAR PARE - People with Arthritis / Rheumatism Across Europe

Patient action group

Extra-articular

The area surrounding a joint

Fibrin

Blood clotting protein

Fibroblasts

Active cells in connective tissue

First degree relative

A close blood relative, such as a parent, sibling or child

Gene expression

The process by which the genetic code is used to direct protein synthesis and produce cell structure

Genome

Genetic material which includes the genes and non-coding DNA

Genotypes

Entire set of genes within a cell

Glycosylation

A reaction that occurs when carbohydrates are attached to proteins

GWAS – Genome Wide Association Study

The examination of common genetic variants in different individuals (usually those with a certain disease and healthy controls)

Histones

Alkaline proteins in DNA

HLA – Human Leukocyte Antigen

The immune system uses HLAs to differentiate between self cells and non-self (or invader) cells

HSPs – Heat Shock Proteins

Proteins that increase their expression in exposure to high temperatures

IgM-RF – Immunoglobin Rheumatoid Factor

An RA autoantibody

Illumina

A system used to analyse genetic variations and biological functions

IL8 – Interleukin 8

A signalling protein which acts as a pro-inflammatory mediator

Immunohistochemistry

The detection of antigens in tissue, using antibodies as reagents (a substance that is added to a tissue to determine if any chemical reaction occurs)

JIA – Junior Idiopathic Arthritis

Arthritis which starts in individuals before they reach the age of 16

Lipid mediator

Chemical messengers that are released when tissue is injured

LNSCs – Lymph Node Stromal Cells

Connective tissue in the lymph nodes

Locus

The location of a gene or chromosome in a DNA sequence

LoF – Loss of Function

A mutation which results in a gene having little or no function

Longitudinal study

Repeated observational study of samples which takes place over a long period of time

Lymphocyte

A type of white blood cell

Mass spectrometry

A process which allows the measurement of molecule characteristics

Metabolites

The molecules produced during the metabolism process

Metabolomics

The study of chemical processes in metabolites

Metacarpophalangeal joints

Finger joints

Methylation

The introduction of a methyl (derived from methane) to cells

Micro CT

3D X-rays

MicroRNAs

Small non-coding RNA molecules

Mini arthroscopy

Keyhole joint surgery

MMP1 – Matrix Metalloproteinase 1

An enzyme involved in the disease process of arthritis

Monocytes

A type of white blood cell

MTA – Material Transfer Agreement

A contract outlining the details of samples to be shared between organisations for research purposes

NIMA – Non Inherited Maternal Antigen

Protective effects in RA, which are transmitted to babies in utero

NMR – Nuclear Magnetic Resonance

Used in medical imaging procedures, such as MRI scans

Osteitis

Bone inflammation

Osteoarthritis

Joint inflammation

Osteoblast

Cellular components of bone

Osteoclast

Cells that re-absorb bone

Pathogenesis / pathogenetic

The cause of a disease

Periodontal

Relating to the gums

Phenotypes

Traits / characteristics of an organism

PLSDA – Partial Least Squares Discriminant Analysis

A form of statistical analysis

PRP – Patient Research Partner

A patient who works with researchers to help them understand the perspective and wishes of patients with a particular disease

PsA – Psoriatic Arthritis

Inflammation of the joints and skin

qPCR - quantitative polymerase chain reaction

DNA amplification technology

RANKL - Receptor Activator of Nuclear factor Kappa-B Ligand

A protein controlling bone regeneration

Rare variant

A gene mutation

RASF – Rheumatoid Arthritis Synovial Fibroblasts

Cells in the joint tissue of individuals with RA

Rituximab

A biological DMARD for RA patients

Seronegative

The results of a blood test, looking for rheumatoid factors, which come back negative. However, the individual could still develop RA in the future.

Seropositive

The results of a blood test, looking for rheumatoid factors, which come back positive. A seropositive individual is more likely than a seronegative individual to develop RA.

SIRT6 – Sirtuin 6

Proteins which regulate biological pathways

Sjögren’s Syndrome

An autoimmune disease, affecting the saliva and tear glands.

SNPs – Single Nucleotide Polymorphism

A DNA sequence variation, occurring commonly in a population in which a single nucleotide in the genome differs between members of a biological species or paired chromosomes.

Stromal

Connective tissue (e.g. a fibroblast)

Synovial

Of a moveable joint

Synovitis

Inflammation of the synovium

Synovium

The soft tissue surrounding a moveable joint

T cells

White blood cells that mediate immunity

TNFα – Tumor Nucrosis Factor Alpha

Proteins which regulate immune cells

Trabecular bone

The interior of a bone

Transcriptomic

Assessing the safety of drugs in biomarker discovery

Vimentin

A protein encoded by the VIM gene, used as a biomarker for colon, gastric and breast cancer

WGS – Whole Genome Shotgun

A method of sequencing long DNA strands

Wnt – Wingless related integration site

Protein pathways that send signals from the outside of a cell to the inside

Writing a letter of support

As a patient research partner, you may be asked to write a letter of support for a grant application. The following resource may help you a) decide whether you wish to write such a letter and b) provide guidance on how to write such a letter.

A Resource for Patient Partners in Research about Letters of Support

Writing a lay summary

As a patient research partner you may be asked to write or provide feedback on a lay summary. This may be, for example, to summarise the research plans, or give an overview of the main findings. The following resource, which although mainly aimed at researchers, may also help you. It highlights the main characteristics that make a summary accessible to all:

How to write a Plain Language Summary (PDF, 185KB)