EULAR PARE 2019, the Highlights

The Best Practice Fair
The Best Practice Fair launched the Conference for all later in the day. It was an enjoyable ice breaker for best practice sharing and networking to meet and greet all the delegates attending.The LUPUS EUROPE Patient Advisory Network PAN Poster was presented to the EULAR President, Professor Johannes W.J. Bijlsma, Head of Rheumatology & Clinical Immunology of the University Medical Centre Utrecht Netherlands and the EULAR Vice President of  PARE, Dieter Wiek from Germany.

The LUPUS EUROPE Abstract
There was preparation before the event including submitting an Abstract on a campaign/activity showcasing LUPUS EUROPE, the Patient Advisory Network PAN. The Best Practice Fair Abstract Booklet was published in advance describing the LUPUS EUROPE PAN, what the reason was for the campaign, highlighting the outcomes and what will be achieved in future activities and projects.
The LUPUS EUROPE Campaign describing our activities was presented in a poster format. There were some organisations that chose a video format, but it was noted later they were not as successful as people tended to walk around looking at posters rather than spending time watching a video. However, if the screens were bigger they may have been more popular as they were only available via laptops at the Stands. The LUPUS EUROPE Poster was centrally placed in the room and in the centre page of the Abstract Booklet… Somehow it was printed I was ‘from Luxembourg’, which was a bit random. However, it is a country I would love to visit!

The LUPUS EUROPE Poster
The Poster had the LUPUS EUROPE butterfly in every corner, incorporating the concept of ‘Don’t Delay, Connect Today !’. This initiative enshrines all three EULAR pillars of patient organisations (PARE), health professional associations and scientific communities. The text comprised of the PAN Introduction, Aims & Objectives, the Action Plan, Task and Conclusions.
Key areas of interest for Lupus research to target considered a patient’s perspective. They were illustrated from a patient survey of living with lupus. In particular, there was a time factor theme in line with the Fair’s requirements;

i. the large majority of people experiencing symptoms that limit ability to carry out daily activities
ii. the huge delay in diagnosis
iii. fatigue & joint pain reported to be the most difficult symptoms to deal with most days
iv. almost half of people are initially misdiagnosed

Pictures bordered the display denoting the main lupus symptoms from joint pain, fatigue, organ involvement to headaches and hairloss. The target in the crosshair was shaped by more pictures of the lupus journey with medications, a body map of symptoms and European flags of all PAN members in the team. A central picture of an egg timer focused the concept of time being of the essence. The speeding up of the research process by patients being at the forefront from the inception of projects.

The Plenary
The opening of the main proceedings of the PARE Conference started on Friday morning. I sat with Ulla Rantanen, the Director of the Finnish Rheumatism Association  (a colleague of our LUPUS EUROPE Trustee, Kirsi Myllys) and Irina Selin. Suddenly, there were lots of oohs and ahhs, in the room as if a Popstar had just entered the room…. Well, in fact according to the EULAR President’s introduction, this was for the Czech Health Minister Adam Vojtech who had come to officially welcome us. He had, apart from being the President of a Czech Lawyer Association before taking office in government, also been a well known singer / musician. I have had the pleasure of meeting the UK’s Health Ministers and Shadow Health Ministers at debates in Parliament, but I challenge any country to have had a Health Minister with such an excited following!

There were presentations, further welcomes and panel discussions by the Standing Committee, Young PARE and various Czech Rheumatological Associations. The presentations focused on the EULAR Strategic Goals 2018-2023 on Advocacy, that by 2023, EULAR’s activities and related advocacy will have increased participation in work by people with RMDs. This included the success demonstrated by research on ‘The Effect of Anti-TNF Therapy on Work Productivity and Activity Impairment in Patients with RA, AS and PsA over One Year – Real Life Data from the Czech Biologics Registry ATTRA from the Institute of Rheumatology in Prague’. In addition, the runner-up of the Edgar Stene Prize 2019, Francisco Carreira Roca gave an impassioned speech about his personal journey as a trained architect and then becoming wheelchair bound in his essay ‘My Ideal Employer – Work without barriers for people with RMDs: Work Right’.

Delegates with lupus attending PARE

At the close of events on Friday in the Plenary Room Dieter Wiek, Vice President of the PARE Standing Committee, made a request to the plenary on my behalf. He asked if any delegates attending with lupus would like to come together for a meet and greet with a photo call at the spectacular entrance of the Don Giovanni Hotel. We found there were seven of us attending from Sweden, Slovakia, Portugal, Poland, Belgium and the UK including the PARE President, the Chair of Young PARE, original and new PAN members, plus current and former LUPUS EUROPE Trustees.

Workshops
We were given the chance to attend some of the workshops taking place at the Conference. Each were led by Facilitators with Case Study Presentations followed by discussions usually split into three groups concentrating on one aspect of the workshop topic. Flip charts were utilised to gather the main points and then presented to the room. Later, the main conclusions were further put to the plenary and a question encompassing the main thrust of the conclusions reached were put to us all to answer, yes, no or maybe with our coloured voting cards.

A. Workshop: Working with Policy Makers, Employers and Trade Unions: a workshop to support the advocacy activities of PARE organisations at national and European levels
The key areas to discuss were the challenges and recommendations in working with policy makers, employers’ organisations and unions in improving working conditions for people with RMDs. In discussing how EULAR and member organisations could better collaborate in the implementation of Public Affairs activities aiming to improve working conditions;
The questions for discussion were:
·  What types of initiatives could PARE organisations undertake in order to improve working conditions at the national level ? We noted; booklets for employers / employees, online courses, a ‘quality mark’ for employers that make positive changes maybe from the patient organisation, promote flexible working, have tax incentives, provide mediation service for employees with RMDs, compile list of supports & services for employers & employees and that advocacy is a key role.
·  How could EULAR support PARE organisations in the implementation of work-related Public Affairs activities ? We noted; data was needed for advocacy and could be supplied by EULAR, they also could gather case studies from other countries, highlight at EU level where countries have not ratified and transposed legislation at national level, provide information on directives and share best practice.
· How could your organisation support EULAR in implementing Public Affairs actions at the EU level ?  We noted we could provide data ourselves, promote surveys, gather evidence, influence our own governments, disseminate information in our countries and translate information even though this can be very time consuming.
It was put to the Plenary, the better way to make use of limited resources when improving the position of people with RMDs in the workforce is to:
a. Focus only on RMDs and what is needed ?
b. Collaborate with the wider chronic disease community to raise awareness of issues such as workplace adaptions, flexible working, etc. ?
The consensus reached was to collaborate.

B. Workshop: Effectively Designing and Presenting a Poster
We were given top tips and tricks to prepare, design, review and present posters with a critique of some questionable posters, an overview of poster design software and presentation. Groups created posters from a series of abstract summaries.

We created a dynamic title asking how researchers involve patients and carers. It had a flow of direction with circles highlighting the background, aims, methods, results and conclusions denoting many of the main points with diagrams. The conclusion was placed directly in the centre to focus attention with a smiley face to illustrate a positive outcome had been reached. There was even a QR code to keep a track of how many would be downloading the poster directly. In conclusion it was found it is not as easy as it looks, planning is key, having a clear brief is helpful, as is knowing your audience, teamwork is vital and there is no right or wrong way to design a poster.
It was put to the plenary sometimes, less is more: Mandatory poster training should be provided to all people working in the field of rheumatology; PARE, health professionals and scientific communities ? – It was agreed to have poster training, but it should not be mandatory.

C. Workshop: Working with Pharmaceutical Companies
The key areas were to identify mutual goals, rules of engagement; regulations, ethical codes and understanding boundaries, funding and how to develop successful relationships. There were many different ways to approach a pharma company via phone, letter, email, a personal contact through a personal relationship, a dedicated person, through doctors, invite them to your events, through their website and in contacting the national federation representing the pharma companies on RMDs.
We worked on three separate proposals for sponsoring membership, invitation to a patient day and the opportunity to co-sponsor. A method of writing a funding proposal included the description of the organisation, project, budget, objectives, the draft programme, demonstrating a win-win situation, polite language and the controversial areas of figures in approaching for sponsoring membership. It was an interesting take away that all those at the table found the sample letters to be too direct and matter of fact even from the first sentence. The consensus was that a softer approach to requesting funding should be adopted encompassing all our cultural differences of what would be palatable. It demonstrated how pharmaceuticals or other commercial organisations may have differing degrees of approachability depending on their foundations being in specific countries even though many have become global entities. In working with ethical codes and regulations it was noted to be aware of the codes, those for both pharma and patients, transparency and clarity, patient driven projects, be neutral & objective and that training is needed – why not from EULAR ?
A scenario was put to the plenary: Big pharma provides patients taking its drug with a calendar to help with adherence. Big pharma wants to add your organisation’s contact details and logo; Should your organisation agree to having its’ details on a drug specific calendar ? The consensus was to refuse.

D. Workshop: Occupational Rehabilitation: how can organisations of PARE support people with RMDs to work
The discussion drew on the disciplines involved and different models of occupational rehabilitation focusing on what should be aimed for. It was decided awareness / support by the general population towards working with RMDs was key as there are benefits for both sides; employees and employers, sharing experiences, best practices between countries, funds, personalised information / interventions and shorter waiting times for assistance.
The Question put to the plenary was; Do you think it is beneficial for employers to have employees with RMDs in the workforce ? The answer was a resounding yes.

E. Workshop: How to Care for Informal Carers’ Needs: what support can organisations of PARE offer ?
The psychological and physical challenges of carers were discussed from the perspectives of:
· an adult caring for a partner
· a person with a RMD caring for someone
· a child caring for a parent with an RMD
It was discussed what can organisations offer and what EULAR can offer. It was discovered the main challenges were guilt, comprehension / understanding, confusing roles, knowing how to ask for help or information and self-preservation. The solutions being better communication between the carer and the person being taken care of, educational support and information, the switch (making one on one time), compartmentalisation and externalisation of tasks, psychological support, occupational therapy, peer support and the importance of shared responsibility (it is not necessary to be there 100% of the time). In conclusion it was asked what can organisations do ? In response it was said mainly education in every aspect; booklets, personal narratives, social media campaigns, webinars, occupational calendar, weekend for caregivers, self-management apps, toolkits, etc.
The question put to the plenary was; Should associations organise activities just for carers like a weekend off separately ? The results were split down the middle as agreement on only carers going was contentious.

F. Workshop: Finding the Right Job at the Right Time (Young PARE)
The workshop was streamed live on the internet focusing on challenges and opportunities, psychological aspects, materials to support people with RMDs to enter the workplace for the first time, remaining in work and returning to work.

G. Workshop: Entitlements and Knowing Your Rights at Work (Young PARE)
EU Health & Safety, disability rights and discrimination were highlighted with a case study from Arthritis Ireland. They focused on what can be achieved by producing how to work with employers / employees materials and how to campaign. The conclusions were that the EU sets up goals, there are minimum / maximum standards on health & safety at work and equal treatment, there is transposition to national law, there is a focus on what people can do for employers and to not forget fellow colleagues.
It was put to the plenary: Who should be the main stakeholder that should take the lead in improving the use of entitlements for people with RMDs from policy makers, patient organisations and EULAR. It was decided it should be the policy makers.

H. Workshop: The Value of Work: asking the right questions was also live streamed on the internet.

Sightseeing and Gala Dinner
An interesting and informative sightseeing tour was most enjoyable taking in many of Prague’s outstanding scenery and landmarks. It was also a chance to catch up with each other on a more relaxed level. There was a very lively Gala Dinner at a beautiful venue on the Vltava River to close the Conference with a lot of dancing and yes many could not resist taking part in doing the Conga !
There will be a pause for a year until the next PARE Annual Conference in two years’ time to reassess and transform. The Event will keep it moving forward to deliver again on an extremely successful Conference to continue fulfilling all of our expectations.