2021 EFPIA Connecting Healthcare Awards - The Winner

Oh , thank you .

It is .

It is a real pleasure to be here as a winner of the 2021 connecting Health care Awards .

Er well , the international map of axonal arthritis I MA is a scientific study that includes the world largest survey of APA patients .

Our goal is to generate evidence based information so that the patient voice is heard and considering clinical practise and decision making , the I A study has highlighted the huge diagnostic delay , the gaps in medical care , the impact on work and field and psychological health of people living with A .

This project is unique because it has brought together patients , patient organisation , clinician and researchers from around the world to generate evidence to understand the reality of patients .

With the help of the patient community , rheumatologists and scientists , I MA S has expanded to 27 countries from five continents , including more than 20 patient organisation and more than 4200 patients who participated in the survey .

I is a living project that aims to reach more countries and patients around the world .

We continue to spread the word about a so that people can live better with their disease .

Living with EPA can be isolating the data from IM show , but challenges the APA patient are experienced .

But it also shows that the patients are not alone in facing this disease .

We , as far from Norway , has written educational articles about the IAS results .

We also use the social media frequently to spread the message , and we are also encourage the patient to speak openly about the challenge of living with this disease .

We also used the data to talk to conversation with policymakers in Norway about the topic of the diagnostic delay to get diagnosed with asthma in Norway today it is between 10 and 12 years .

This copulation has given us the opportunity to improve the lives of patients in Norway and around the world , and now I head over to LA to continue on this topic .

As a artist , we've committed to providing educational opportunities that are informed by patient community insights that empower patients to seek the right care and that help health care professionals to best treat their patients with I MS and together with our partners , we are bringing this commitment to life .

We've also committed to ensuring that across all levels of our organisation that we truly understand the patient perspective .

Last year we brought the I MS data to our Novartis Executive Committee as well as more than 500 field associates .

Having this knowledge allows them to integrate the A O patient perspective in their decision making and in their conversation with rheumatologists .

Now I'm gonna invite Doctor Paju , a rheumatologist himself , to also give his perspective on the topic .

Thank you very much .

As a practising rheumatologist and a scientist , I'm really happy to be a part of this impactful project .

Um , over past years , um , that project generated more than 60 abstracts presented at the international Congresses .

And as of today , 10 fully published manuscripts and , uh , more , uh , manuscripts are to come and I I have to stress that , uh , out of this project , we received data covering um , aspects of the disease or patient life , which are not necessarily covered in a daily conversation with rheumatologists in daily clinical practises , but also not in in normal rheumatological research such as mental health , impact of a disease on working life , on sexual life , on work and also about fears and concerns of patients .

Um , they might have in relation to the disease , but also in relation to the treatment and to the long term outcomes of the disease .

I think all these aspects are really important also in daily clinical practise , Uh , when when we diagnose and treat our patients with XL SP .

So the working relationship with Novartis has been genuine , open and supportive and overall a really positive experience , especially for me personally , on a collaborative project like this , establishing clear roles and responsibilities from the start has really enabled us to be effective and more efficient .

Meeting regularly to manage the day to day operations is key , but even more important is that desire to work together to achieve the the collective goals of the I MS project .

I can honestly say that we've built an excellent working relationship with all partners that does require a lot of openness and trust , and it can take time .

But it is so pleasing that everybody has brought that into this project , as if as an organisation have been actively involved in reaching out to our members to invite more countries to take part in IAS , that's led to the opportunity for a further eight countries to participate and it's been fantastic to be able to expand the reach of I OS even further .

We also ask for patient organisations for their input into how we best use the I MS data and that's to ensure that we're using it in the most effective way possible to improve patient care .

Novartis have been such a huge part in managing this collaboration and I imagine that Lara , you have something to have from a nova perspective .

I has been a true team effort , so thank you very much , Joe , for your kind words .

We've made this a team effort both within and outside of the artist .

Each partner brings a unique value to the project that gives us all the opportunity to draw on each other's expertise and strengths .

The success in elevating the patient voice and scientific fora would not have been possible without the University of Sabi and the Scientific Committee .

It's thanks to the patient organisations that over 4200 patients have participated in the study and it's thanks to the patient organisations that today the data is having such impact in the political space as well as among patients as an artist .

We've worked as a connector , drawing on our internal expertise to bring the project to life and our partnerships to unite stakeholders together .

We've been able to maximise our on the ground network to bring awareness of this evidence among rheumatologists around the world .

But altogether , in using the I MS data , we're enabling multi stakeholder discussions that aim to improve the lives of patients with asthma .

Like I said , an incredible team effort , a long term collaboration that really demonstrates how a common purpose can lead to significant impact in health care .

So from the outset of artist and as I drew up a collaboration agreement , and that's really to underpin the nature and the obligations of the partnership , as well as to set out clear roles for all of the partners , we continue to have regular , transparent and open communication .

That's partly to ensure we're aligning on daily operations , but it's also to enable us to make decisions together and to make them effectively .

We formed a committee to oversee and steer the progress of the project .

The committee includes , as if Novartis and the University of Seville , and they're the three main partners responsible for actually delivering IMAs .

We created a detailed work plan , setting out IS priorities and project activities for all partners .

And we keep all partners up to date on the project progress that includes the patient associations around the world , Nava affiliates and rheumatologists .

I'm sure Novartis will have something to say about this as well , and I'd like to hand over to Lara for her perspective .

I completely agree .

Our collaboration is grounded on mutual value and with a clear common objective .

We also have a clear governance structure .

The committee that has strategic oversight of the project , the Multidisciplinary Scientific Committee , which includes patient research partners and rheumatologists , who ensure that the data is analysed and interpreted and communicated in a robust manner .

And of course , the Inco patient groups , Novartis affiliates and physicians who not only ensure the local implementation of the strategy but drive its execution .

So , first of all , bring all the stakeholders with the interest under one roof , you have to make sure that the project is based on real need and patient insights .

It's really important to define the roles and responsibilities early on of all the partners and to maximise their strengths and absolutely key to make sure that you have open and honest communication from a patient organisation .

It is so important that we stand together and work together on this , make you dream big .