Getting involved in Patient and Public Involvement

I promised so many friends I would email you about how to get involved in research and do the stuff I do but I haven’t emailed any of you so figured I would do a post about it instead and then everyone can see it and everyone can get involved!!

The centre I am part of is the Asthma UK Centre for Applied Research or AUKCAR for short.

What is it?? It is a virtual centre (there is no base or one place it is) made up of a number of different universities across the UK. There is a range of researchers from PhD students, early career researchers to fully fledged Professors etc.

What is applied research?? Rather than basic science where they look to develop new drugs or gene therapy etc. Applied research looks to solve practical problems and everyday issues so for the centre they are looking to: encourage good asthma control,  maximising benefits of treatment and reducing asthma attacks and asthma deaths.

What is Patient and Public Involvement (PPI) ? PPI is working alongside researchers as colleagues to ensure the research they are doing is applicable to those with the condition. You are not being part of a study doing PPI but advising on all stages of research from grant applications, to lay summary and then the spreading the results of the research. By doing PPI we can contribute to research in a fundamental way which many researchers cant. We can tell them what it is like to live with asthma or live/care for someone who has asthma. We can give researchers this knowledge and help them ensure their research is going to benefit those with asthma rather than research being done for research sake.

Do I have to do training to learn how to be involved in PPI? No. There is no formal training for PPI. The members in AUKCAR are more than happy to give you advice on how to go about tasks and often meeting other PPI group members is the best way to learn and get help. Thats what I did with another PPI member who I met. She was able to show meter advice about what to do. Even though our views don’t always match and can be polar opposites it is our opinions and this is what the researchers are needing.

What type of things do you have to do? There is a huge variety of things you can do. It can be face to face in focus groups, discussion groups or interviews. The majority of things are done virtually in the form of reviewing lay summaries, patient information sheets or questionnaires. There is also the chance to be a co-applicant for research grants, be part of a steering group for a particular study. There is also the chance to review PhD proposals and abstract submissions for the annual scientific meeting. As well as all this there is opportunities to spend time with the SPEAK Asthma group (Children and Young Persons Group) depending on your areas of interest. As part of the PPI group AUKCAR attend Science Festivals, go to schools who may host an asthma event, work with engineers designing tools to make asthma management that bit easier. The important thing to remember is that with PPI there is no right or wrong answer, you have been asked to give your feedback so give your feedback- you will find that most of the other PPI members have the same views and input. Don’t be worried about asking for help or guidance.

How do I find out about opportunities? You get an email request from AUKCAR saying that there has been a request for PPI and then there is a brief description of the study and what PPI input is required. Sometimes there is loads happening and there are lots of requests but equally there is some periods of tie when you won’t hear anything. There will always be a deadline on when feedback is required- this can sometimes be quite short from the time of finding out about the request- but this is because the research world moves fairly quickly with some things but then fairly slowly with other things!

How much time do I have to spend? You can spend as little or as much time as you like. I spend a lot of time being involved in different things the centre are doing but that is because I really enjoy it and it fills my time when I am not able to work. If there are requests that come through and you don’t fancy it then that is ok just don’t reply there is no pressure to do everything.

How much does it cost if I attend a face to face meeting? If you are requested to attend a face to face meeting for an AUKCAR event your travel and accommodation will be provided by AUKCAR, if you attend a focus group the researchers will give you expenses for travel and sometimes a voucher for your time. You shouldn’t ever be out of pocket for doing PPI.

have other difficulties other than my asthma, can I still get involved? Yes you can still be involved. There are lots of people who don’t just have asthma and their input is valued just as much as someone who only has asthma or are the parent or carer of asthma. There is also the possibility to get things sent out on paper if you struggle using the internet. We have people in the group who don’t like using computers and equally some who are blind or deaf too and they give just as much input as those who don’t. Anyone can do PPI and join the PPI group.

If you are keen to get involved follow this link for AUKCAR PPI page and sign up. Or if you speak to me before then I can let them know and get you linked with the centre. You can also read more about the PPI group in this link too!!

I have written so many times about how much fun I have had with AUKCAR and beyond that. It has given me so many opportunities that I struggle to remember everything I do but the highlights are:

  • Published in the BMJ: Just Relax Concentrate on your Breathing
  • Featured as one of the healthcare heroes with Havas Lynx and their book about Healthcare Heroes
  • Speaker at the NHS Scotland Research Annual Conference with Allison Worth about “Working together to drive great research
  • Spoke at the AUKCAR annual scientific meeting about what the PPI group have been doing and what SPEAK Asthma has also been doing
  • Speaker at Asthma UK about what life is like with severe asthma for their severe asthma funding call
  • Speaker with Asthma UK about how big data can benefit those with asthma
  • Lecture about PPI for the PPI Module of the Clinical Trials Masters at Edinburgh University
  • Speaker at NHS Research Nurses open day
  • Member of Patient Advisory Group for European Lung Foundation
  • Member of Astra Zeneca’s Patient Partnership Programme and speaker
  • Research and Policy Volunteer with Asthma UK
  • Mentor for PPI Champions in NHS Lothian

This is the some of the highlights from being involved in research. I have loved every minute of it and really do enjoy doing it. My catch phrase which I use often and sometimes its sounds cheesy but being involved in research really has made a positive from a really sh***y or negative situation. There is so much more I have done and more I am doing in the future so if you do want to find out more please just fire me a message or email me. Even if you don’t have asthma but want to get involved in research I can point you in the direction of what might suit you and who can best help.

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