Patient & Public Engagement

Patient & Public Engagement


BIRD is committed to encouraging greater public awareness of bone and joint diseases and helping patients, their friends, family and colleagues to understand their condition. Our Patient & Public Engagement (PPE) initiative focuses on setting up opportunities to connect, learn and share. People tell us what great value there is in talking to others who understand what they are going through.

Our popular disease-specific information days feature talks from a variety experts in the field. They will give you an overview of the condition and medications, research news and tips for self-management. We are also committed to getting patients involved in research by sharing opportunities and offering support. We have also started work on providing podcasts and webinars for those who cannot attend our information days too!

Please join us and share ideas from your perspective, whether you are a patient a family member or friend – we invite and encourage everyone to get involved – you can find us on Twitter and Facebook or to register for an events email Admin@birdbath.org.uk.

We also have a friendly group of volunteers who help us out at Information Days, focus groups, by testing questionnaires, planning events, fundraising, giving out leaflets and coming up with new ideas. They mainly help to meet and greet people as they arrive, and tell us they enjoy being part of the day. If you’re interested in joining please get in touch with Mel at PPE@birdbath.org.uk.

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Join our mailing list

To keep up to date with information, events and research opportunities, please join our mailing list.

Type in the following to your web browser: http://eepurl.com/drcjn5 or click on the link button below.

Join our mailing list

To keep up to date with information, events and research opportunities, please join our mailing list.

Type in the following to your web browser: http://eepurl.com/drcjn5 or click on the link button below.

Free Information Sessions

Our popular disease-specific information days feature talks from a variety experts in the field. They will give you an overview of the condition and medications, research news and tips for self-management. There is usually a complimentary refreshments and you are welcome to bring a partner, carer or friend.

We now also offer online versions of our events. Please see links for those below too! We have started with ‘Podcasts’ which are a way of listening to information via your computer, mobile phone or tablet. We have created a public profile for BIRD with a small ‘trailer’ – it’s our new online venue that you can visit and listen to PPE podcasts! You can try it out here: https://anchor.fm/bird-ppepodcasts. We would love to hear what you think as this is a very new area for us and one we hope to build on going forward. Please email Mel ppe@birdbath.org.uk with comments and suggestions.

To sign up for an event, please email Admin@birdbath.org.uk.

3 April 2020

Podcast - ONLINE

30 March 2020

Podcast - ONLINE

4 July 2020

BRLSI, Queen Square, Bath

16 September 2020

BRLSI, Queen Square, Bath

Get involved in research

We get lots of requests for help to get patients engaged with research from research active consultants and clinicians and from University researchers.

So far we have helped design short surveys for use at information days, found a patient partner for a Rheumatoid Arthritis study, run workshops in Fibromyalgia and Axial Spondylitis and found patients for a Microbiome Study.

Here are a few of the current and upcoming opportunities you can get involved in.

If any of the opportunities are of interest to you please email PPE@birdbath.org.uk.

The British Psoriatic Arthritis Consortium is working with the James Lind Alliance on a priority setting partnership (PSP) project and have created a survey to find out what people think the research priorities for psoriatic arthritis should be. The aim is to create a national top 10 list of priorities from the results

This is a really good opportunity for people with all kinds of experiences and backgrounds (people with psoriatic arthritis, their families, carers and clinicians) to have their say and tell researchers what they would like to see researched in the future.

The survey results will be used to help prioritise funding for research in the future.

Start the survey here (and please share it) – it should take no longer 5-minutes to complete.

Thank you.

** Survey now closed **

 

Dear all,

As you may already be aware BIRD has a close relationship with the Royal National Hospital for Rheumatic Diseases (RNHRD). We work with them for our Information days and increasingly with research projects.

The Specialist Rheumatology Physiotherapy Team have asked us to help them gather input and feedback from you regarding their AxSpA Rehabilitation course redesign.

The RNHRD are changing the way they work in response to the COVID-19 pandemic and the need for social distancing, so are in the process of creating an online Axial Spondyloarthritis Rehabilitation Programme. They would very much value your feedback and ideas to help shape this exciting new service.

Please find the link below to an online questionnaire, which is completely anonymous and should only take a few minutes to complete.

 

Many thanks in advance,

The AxSpA Team at the RNHRD and the BIRD Team

BIRD have had a request to help find participants for a project looking to assess if virtual museum experience helps to alleviate chronic pain and isolation.

 

Can virtual museum experiences help reduce social isolation and chronic pain?

Seeking participants for new online study to find out.

Chronic pain is complex. It affects the body, the mind and social interactions. Over 100 million American adults suffer from chronic pain  ̶  more than those with heart disease, cancer and diabetes combined. Previous studies have shown that social disconnection can make pain feel more intense, while social connections can help decrease the intensity. But researchers are still learning how to translate those findings into patient care.

Since 2014, the University of California, Davis (UCD) health system and the Crocker Art Museum in Sacramento, CA have collaborated on research that points toward benefits of museum programming for people with chronic pain. However, with the museum temporarily closed due to COVID-19, all programming was suspended. Fortunately, the museum programs are now being offered online and at no cost, allowing anyone with an internet connection anywhere in the world to participate.

An international research team consisting of scholars from UCD, University College London and the University of Zurich want to know how these virtual museum experiences impact individuals with chronic pain and need participants.

They hope to learn if two new virtual museum programs at the Crocker  ̶  Art Rx and Artful Meditation  ̶  can decrease the social disconnection and the unpleasantness of chronic pain. And they are looking for volunteers.

Research participants will be randomly assigned to one of four groups:

  1. A control group that will continue its current care.
  2. A virtual museum tour group – “Art RX”
  3. A group that takes part in a virtual meditation program from the museum – “Artful Meditation”
  4. A group that goes through both the virtual Art Rx and the Artful Meditation programs

Participants will be asked to take a 20-minutes survey about their experiences. They will be surveyed before their program, right after, then three-months later. Researchers may also ask participants questions about their experiences in the study. The research team will want to know the impact the experience may have had on a participant’s health and on their relationships with others. These interviews will take an hour or less.

 

Who can participate (people who fit these criteria):

  1. 18 years of age or older
  2. English speaking
  3. Chronic pain lasting six months or longer
  4. Moderate pain or greater (4/10 or greater on a Numerical Rating Scale, range of 1 [no pain] – 10 [worst pain imaginable], in response to the question: “Over the past week, what was your average pain intensity?”)
  5. Moderately lonely or greater (Score of 4 or greater on a three-item Loneliness Scale, range of 3 – 9)
  6. Have a Wi-Fi enabled device (e.g., desktop, laptop, smartphone, or tablet), and a Wi-Fi connection.

 

Who cannot participate? (Someone who fits at least one of these criteria):

  1. Participated in an Art Rx tour already
  2. Participated in an Artful Meditation program already
  3. Suffering from dementia or Alzheimer’s disease
  4. Unable to complete surveys

 

How to enroll

To enroll in this study, CLICK HERE.

 

For more information

Visit our study page or contact Ruchi Rawal, project manager, at ucdhartrx@gmail.com or (916) 619-3383.

 

We are conducting this research in collaboration with the Culture, Health and Wellbeing Alliance and the RSPH SIG Arts and Health.

This project is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through grant number UL1 TR001860 and linked award KL2 TR001859. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

BIRD have been contacted by Dr Prasad Nishtala from Bath University, who along with rheumatology colleagues at RUH are putting together a project proposal about using Artificial Intelligence in Multimorbidity (people who have more than one long term health condition).  Dr Nishtala would like to gather some patient feedback on the proposal.

 

Background

There is very little information about which medical conditions occur together most commonly in patients with immune-mediated inflammatory diseases (IMIDs). The most common IMIDs include rheumatoid arthritis, inflammatory bowel disease, systemic lupus erythematosus, psoriasis, and psoriatic arthritis. Multimorbidity refers to the existence of multiple medical conditions in the same individual and is common amongst people with IMID’s. The issue is a growing public health problem. There is an urgent need for a better understanding of multimorbidity amongst people living with IMIDs.

Please click here to see the proposal.

Dr Nishtala is asking people to share their views on the following questions:

  • Do you think the research proposed by the study investigators is important?
  • Do you think this research will benefit people living with IMIDs?
  • Are there any important issues which could be addressed in the proposed the study, which are not currently going to be investigated?
  • If you are living with an IMID, how likely would you be to participate in a further study, if the results of this study look promising?

Please send your thoughts to Mel at ppe@birdbath.org.uk  (the full outline is available on request and feel free to cover any other aspects which may have been missed).

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Help support BIRD by making a contribution

Our work is built on the kind donations and bequests of previous generations. If you like what we do and would like to help, please consider giving us a donation, or a gift in memory of someone dear to you, inscribed on our benefactors’ board, or even a legacy. £100 would provide refreshments all year for a monthly patient support group meeting. £1000 would cover the print and postage costs for a patient information day and newsletter. £2000 would pay for a Summer Studentship for a scientific researcher. £10,000 would fund a small-scale pilot research project.

Support Us

Our work is built on the kind donations and bequests of previous generations. If you like what we do and would like to help, please consider giving us a donation, or a gift in memory of someone dear to you, inscribed on our benefactors’ board, or even a legacy. £100 would provide refreshments all year for a monthly patient support group meeting. £1000 would cover the print and postage costs for a patient information day and newsletter. £2000 would pay for a Summer Studentship for a scientific researcher. £10,000 would fund a small-scale pilot research project.