Research involvement news and activities

Attending a research funding committee: a patient insight partner’s view (13 August 2018)

Written by Debra, patient insight partner

On the 23 May 2018, Debra was a guest member on one of our research funding subcommittees, where researchers and patient insight partners collaborate to decide on funding for the most relevant and scientifically excellent projects. She shares her experience with us below.

Thankfully the meeting was in Chesterfield and I was able to drive there as I live locally. I had reviewed the research proposals some weeks before, and compared to other reviews that I had previously done, these were a little more involved as I had to include the rebuttal comments after peer review and present an overview for the panel. The lead from Arthritis Research UK had previously confirmed that I was positioned to speak before lunch as my illness makes me fatigued later in the day.

The Chair introduced everybody and specifically welcomed me to the group expressing that if I had any questions I had to ask and that my contribution would be paramount as a patient that lives with musculoskeletal illnesses day to day. Each proposal was presented and then discussed, and the Chair asked us to score each one. At the end of the session the scores were collated and ranked so we could discuss the outcomes and confirm that we were all happy with the results.

Initially I felt quite intimidated with all the doctors, professors and medical people in the room but everyone made conversation and made me feel valued and included within the group. Discussions were open, honest and informal, the Chair was very clear to explain why certain people kept leaving the room when they were 'conflicted' for the proposal being reviewed at the time. If any of us had any comments we raised our hand and the Chair enabled us to speak in turn. There were three other patient insight partners present on this subcommittee so I had a few familiar faces. My opinion was included on all of the proposals and on more than one occasion I was thanked for attending and for giving my time – a perspective that can only be given by somebody who lives with a musculoskeletal illness.

I am so honoured to be involved with Versus Arthritis and think it is amazing they are giving patients voices at all levels of the charity. Thank you for enabling me to have a purpose in life and taking some control back from the pain.

Curing arthritis - what's it all about (12 July 2018)

Written by Simon Stones, patient insight partner

On Monday 9 April 2018, I attended the Arthritis Research UK cure strategic workshop, held in London. The purpose of this workshop was to bring together a wide range of experts (including people with musculoskeletal (MSK) conditions, basic and clinical researchers, healthcare professionals and other research funders) to identify and discuss current unmet patient and research needs. The ultimate goal was to define the scope of the next ambitious strategic challenge funding call, which researchers will be able to apply to in order to attempt to secure funding for their research proposals. This specific call seeks to find a cure and more effective treatments for MSK conditions through research from the bench to the bedside. This call builds on the November 2016 challenge funding call, called 'Stacking the odds towards a cure'.

Stacking the odds towards a cure

In their 2020 strategy, Arthritis Research UK ambitiously outlined their strategic focus to prevent the onset of MSK conditions, while striving to develop a cure and transforming the lives of those with MSK conditions. In the last decade, Arthritis Research UK has funded over £250 million into research across the spectrum of MSK conditions, which has enabled boundaries to be pushed beyond what was previously thought unimaginable. Since the turn of the century, we've seen the rise of biologics and biosimilars, which have revolutionised the way that MSK conditions are treated. We've seen an investment in personalised medicine, recognising the uniqueness of our bodies, and the concept that our genes influence the way in which we respond to different treatments.

In November 2016, we launched the 'Stacking the odds towards a cure' funding call, in which the charity invited research applications that would accelerate the pathway to discovery (laboratory-based research) and early translation (first-in human research), with the goal of developing a cure and more effective treatments for people with MSK conditions in the future. But what does cure mean to you?

What cure means to different people

Cure is a bold statement. In the context of long-term conditions like MSK conditions, cure means ‘A time without recurrence of disease so that the risk of recurrence is small.’ This is usually the definition that springs to mind for most people when we think of cure - curing cancer, curing dementia, curing MSK conditions. In reality, cure isn't that straightforward - and indeed, the pros of a 'cure' need to be compared to the cons of a 'cure'.

While some research won't directly lead to a cure or new treatment in the short-term, it could do in the longer-term - enabling the community to move closer to the goal of fully understanding the disease processes underlying all MSK conditions, as well as the pathways and potential targets for future treatment. The journey to a cure may well be different for each disease area, but nevertheless, an important journey.

During the workshop, we had many discussions about what 'cure' could mean to patients, and often, patients expressed differing perspectives to healthcare professionals. Healthcare professionals and researchers are naturally focused on achieving disease remission and, ultimately, eliminating the disease from affecting people's quality of life. However, for patients, the journey to a cure could be worse than the disease itself, particularly if treatments have a negative effect on people's physical and psychosocial wellbeing. Therefore, a cure for a patient could mean minimal disease activity, no treatment side effects and a good quality of life.

Cure part II

Therefore, to fulfil the aims of this research challenge funding call, some research may be of higher risk, but may also have longer-term outcomes with respect to transforming the lives of people with MSK conditions. This type of research often requires new, collaborative teams of researchers, healthcare professionals, patients and industry, which can only be a positive move. Examples of innovative and bold moves were highlighted in presentations from Professor Iain McInnes, Professor of Experimental Medicine at the University of Glasgow and President-elect of the European League Against Rheumatism (EULAR), and Professor Ali Mobasheri, Professor of Musculoskeletal Physiology at the University of Surrey and a Board Member of the Osteoarthritis Research Society International (OARSI). Both Iain and Ali led discussions based upon national and international policy documents and priority setting exercises, including EULAR's research roadmap, RheumaMap (PDF 982 KB) and Versus Arthritis's State of Musculoskeletal Health report. In the report, some disturbing figures were described, such as 78% of people with MSK conditions experience pain most days, and 53% of people feel as though they are a nuisance to their family.

We also heard from Dr Natalie Carter, Head of Research Liaison and Evaluation at Arthritis Research UK, who initiated a discussion led by patient insight partners regarding what cure looks like to patients. Subsequently, Jane Taylor, Colin Wilkinson and Lynn Laidlaw spoke about their experience of a recent Arthritis Research UK patient insight day, and subsequent dialogues, which related to the concepts of cure meaning different things for people with arthritis, in terms of experiencing a more favourable quality of life, compared to eradication of disease for eternity.

After lunch, the group were separated into four breakout sessions aligned with Arthritis Research UK's newly established research advisory groups (RAGs), which evolved from their existing clinical studies groups (CSGs). These were:

  1. Inflammatory arthritis
  2. Autoimmune rheumatic disease
  3. Musculoskeletal disorders and
  4. Paediatric rheumatology.

During these sessions, groups discussed what unmet needs and previously identified research priorities reflect the ambition of providing a cure, as well as what gaps are believed to be missing, and where are the possibilities of discovery, pre-clinical and clinical research in the UK. Within our paediatric rheumatology breakout session, we had some deep and meaningful conversations about the purpose of 'cure' for children, young people and their families. We initiated our discussions based upon the co-created paediatric rheumatology CSG research strategy from 2015, which included a series of research questions across different paediatric rheumatology areas, including patient- and parent- designed research questions. One of the most important priorities for us is about improving the tolerability and delivery of methotrexate. Many of us have experiences of methotrexate, and understand how unpleasant the treatment experience can be for children, young people and families – sometimes even life-changing. I emphasised here that for these individuals, cure could well be a better experience of methotrexate without the side effects, which in turn, could help to reduce disease activity, since the medicine is generally effective at treating certain paediatric-onset MSK conditions, such as juvenile idiopathic arthritis. It is only by having these conversations that we can begin to unpack the complexity around what cure means to different people, but mostly importantly, what needs to be addressed to improve the quality of life of people with MSK conditions. While cure in the broadest sense seems a destination far on the horizon for the MSK community, we must never lose hope of a brighter future for everyone, and the many avenues that could take.

Debating research at a parliamentary drop-in session (23 May 2018)

Written by Maureen Grossman, patient insight partner

I have osteoarthritis and have been a volunteer with Versus Arthritis for nearly ten years, most recently as a patient insight partner. Attending the MPs drop-in session at the Houses of Parliament was one of the many interesting opportunities I have had to support Versus Arthritis.

I was on the research stand where MPs were asked to take part in a game where they had to choose which research projects to invest in. Some MPs struggled to spend the 'million pounds' that we gave them and to decide which of five research projects should have priority. Katherine Free (Research Engagement Manager) and I explained as concisely as we could what each project was about and whether it was currently 'science fiction' or quite close to becoming immediately applicable to patients. Quite a few arguments developed, mostly between MPs, which I found fascinating. Some MPs were more risk averse than others.

This activity made me even more aware of my responsibilities as a patient insight partner, where I consider grant awards of thousands, if not millions, of pounds. The MPs, many with arthritis themselves, certainly became aware of the pressing need for a charity such as Versus Arthritis. I loved attending the event, and felt by being there I was making a difference, raising the awareness of arthritis in Parliament and encouraging MPs to consider strategies in their constituencies which would ideally prevent the development of arthritis, but at least slow progression and provide support where needed.

Visiting the rheumatoid arthritis pathogenesis centre of excellence (25 April 2018)

Written by Lynn Laidlaw, patient insight partner

The Arthritis Research UK Rheumatoid Arthritis Pathogenesis Centre of Excellence (RACE) is based at the Universities of Glasgow, Newcastle and Birmingham and is going through the process of applying for renewed funding from Versus Arthritis. Patient insight and involvement characterises everything that Versus Arthritis do so when RACE held an event recently in Glasgow to publicise the wonderful work that they do to local MPs and MSPs, I was fortunate to be invited as a representative from the patient insight partner group. I had previously attended the RACE on two occasions to discuss patient involvement in research.I feel very much at home there and it was lovely to meet up with everyone again. Professor John Issacs from RACE in Newcastle was there, as well as Stephen Simpson (director of research at Versus Arthritis) and colleagues from Arthritis Care, who are now merged with Arthritis Research UK.

After some time chatting, including a lively debate on health inequalities, we got down to business with some excellent presentations on the work of RACE and Versus Arthritis. The things that stood out for me were how much Versus Arthritis have invested in arthritis research in Scotland (£17 million), the wonderful collaboration between the three RACE sites, the PhD programme which is training the arthritis research scientists of tomorrow, and the amount of industry and European Union money RACE has attracted due to the excellence of their research.

Professor Iain McInnes spoke with real pride and affection about working in the east end of Glasgow and the amount of investment there has been recently, in Glasgow University and the new hospital known in the city as "the Death Star" – Glaswegians have a wonderful sense of humour! Professor Issacs touched upon how RACE is working towards a cure for rheumatoid arthritis, something that would have been unthinkable a few years ago. I tried to provide some insight into what it is like living with a form of arthritis and how it’s more than just joint pain, also how much I appreciated the research that Versus Arthritis funds as it brings real benefit to patients. Versus Arthritis funded research into anti-TNF treatment which has made a real difference to my quality of life.

The MPs and MSPs wanted to know how much Brexit would impact on arthritis research in Scotland, the difference between rheumatoid arthritis and osteoarthritis, as well as how poverty impacted on patient outcomes in arthritis. We were then privileged to be taken on a tour of the labs and meet the researchers which was very interesting and informative. Time for a photo opportunity and some interviews which were made into a short video to publicise the visit.

It was a great morning – the MPs and MSPs were obviously impressed and will hopefully give musculoskeletal health the priority it deserves. I am proud to be associated in a small way with the work of Versus Arthritis. The money that is fundraised makes such a difference to people’s lives. The event was a very practical demonstration of why research is so important and the impact it can have on treatment as well as better understanding of why patients develop arthritis in the first place.

Pioneering Partnerships at the Patients First Conference (4 April 2018)

Written by Frances Borrer, patient insight partner

As a newly recruited patient insight partner for Versus Arthritis I was delighted to be invited to the ‘Patients First: Pioneering Partnerships’ conference recently, and it was a real privilege to be asked by research involvement manager, Chris Macdonald, to speak at the seminar he was delivering as part of the conference. The subject of the seminar was the importance of patient involvement for industry and charities, and my role in it was to discuss a workshop I took part in with other patient insight partners and a leading pharmaceutical company.

As Michael Seres, the inspirational opening speaker at the conference, said “every patient has their story” and I am no exception. I have always felt the patient voice is crucial, especially in any long-term condition such as rheumatoid arthritis (which I’ve had for nearly 40 years) as no one knows what it is like in quite the same way as those who live with it day in day out.

Throughout the conference we listened to a number of speakers, including humbling stories from patients who had made their voices heard and were determined that, if not for themselves, things are better for those who come after them. Part of why I became a patient insight partner is so that a 23-year-old diagnosed with rheumatoid arthritis today does not feel as frightened and helpless as I did all those years ago. So their views certainly struck a chord with me.

It was encouraging to hear how charities, research organisations and the pharmaceutical industry value the unique insights that patients have to offer and are harnessing them to improve and enrich what they do. Taking part in the conference certainly opened my eyes to how much work is being done to ensure that patients are involved at every step – and I came away feeling very positive about the future for patient involvement – it’s a win/win situation!

Spark-ing up a win for Workey (6 March 2018)

For the last three years, we’ve teamed up with the Design Council on the Spark programme to support the development of assistive products that help people living with arthritis to live well and for those products to offer additional therapeutic benefit.

The winners of 2016’s Spark award – Handy Fasteners have developed an online retro-fitting service, so you can post items of clothing to their team who will replace fiddly buttons with a handy magnetic alternative before returning to you. They used the funding awarded for their win to take their idea from initial concept to production in just twelve months.

On the 12 September 2017 at the Spark Showcase event, the winner of the most recent Spark programme was revealed…

Workey, the invention of architect, Geoff Rolandsen, was awarded funding of £50k plus continued business support.

Workey

The Workey key turner is a product that helps ease the use and management of keys, with particular benefit to those with reduced hand dexterity. Geoff is a design manager with a degree in Architecture, based in London. He came up with the idea following the experience of his father, who suffers from reduced hand dexterity.

Geoff explains; "We first discussed a concept for a sleek pocket-able tool which could overcome the shortfalls of existing products. Since that conversation the concept has stuck in my head and over time grew from a sketch on the back of an envelope into a range of tried and tested prototypes".

People with arthritis have said that using keys to open doors is a big problem when your hands and wrists are in pain (or have limited strength). Workey is an extension that gives leverage so that less strength is required to turn the key. A workshop with people with arthritis took place in May 2017, where Geoff brought along a wooden box with makeshift doors on each side – representing different types of locks, keys and positioning. He received valuable insight from people who attended the workshop and made changes to the materials and design of Workey based on the feedback.

As the project moves forward, the plan is to develop a range of products based on the Workey design. You can keep up-to-date with the Workey brand through their website (www.myworkey.com) or on Twitter @The_Workey

The next round

As the Design Council announced the winner of Spark 3 at the showcase event, they also launched the next Spark programme, which we’re collaborating with them on once again. In January 2018, four of our patient insight partners joined a panel of design and engineering experts to select a top three for the next stage of the programme. The three desigers will be pitching their final products to the panel, including patient insight partners, on 4 June 2018.

Meet the research involvement team (6 March 2018)

Towards the end of last year, we embarked on a project to develop new webpages dedicated to research involvement activities. A workshop followed in November with a number of our patient insight partners , and the pages you see today are a result of what people with arthritis have told us they want to see. But before we begin, let us introduce ourselves…

Who are we…

In another life, Chris (research involvement manager) was a basic researcher – based at one of our centres of excellence as a matter of fact! He’s seen life on the other side and has seen the transformation that the organisation has undergone in its commitment to people with arthritis.

Charlotte (research involvement officer) used to edit academic law books and scientific manuscripts/posters/slide decks (in multiple sclerosis, vaccinations, diabetic retinopathy and rheumatology), and has much personal experience of advocating for the involvement of people with long-term health conditions in research.

What we do…

  • We recruit people with arthritis to form a group of incredibly engaged volunteers; our patient insight partners (PIPs).
  • We support this group to ensure that their insights have maximum impact, whether that’s as members of our research subcommittees alongside researchers, in their reviewing and evaluating of research projects, or as part of recommending panels for projects such as Spark.
  • We work with our colleagues to ensure that patient insight is integrated into all of our research activities – from setting research priorities to training researchers in patient and public involvement (PPI).
  • We work with the other UK and international research funders from across sectors to promote and progress patient involvement.

and much, much more!

Why we do it…

There is an old patient involvement saying, ‘Nothing about me; without me’. It epitomises our approach to involvement, whereby none of our decisions or activities should be made without the insight of people with arthritis. This perspective ensures that we’re focused on the unmet needs of people with arthritis. So when this is combined with the technical expertise of researchers, we can be sure we’re funding the most relevant, most appropriate research.

In line with the shift of our strategic focus and the increased involvement of people with arthritis in our research activities over the last five years, the research involvement team itself has also grown considerably – from 30% of one person’s role, to our two-person full-time team! This commitment to involvement really embodies the charity’s strategy to put people with arthritis at the heart of everything we do.

That’s all for now. If you’d like to know more, feel free to drop us an email at patientinsight@arthritisresearchuk.org