#ChronicillnessVOICE SPECIAL EDITION ‘PHARMA’ APRIL 2019 | eyeforpharma Barcelona review

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However, I get around my anxieties by practising meditation for weeks prior to an event to help keep me calm, centred and co-ordinated in the mind.

EXPERIENCE /REVIEW: Panel DiscussioN ~ Carole
#chronicillnessVOICE special edition ‘pharma’ April 2019

EXPERIENCE /REVIEW: Panel Discussion

Topic of discussion >>>
From collision to collaboration: How diagnostics, pharma and patients can succeed together.

  • In the new era of personalised medicine matching the right patient with the right area requires pharma and diagnostic collaboration
  • Understand how the two can collaborate, combine strengths and establish a true partnership that will lead to better patient outcomes.

Kathy Barry: SNOW Companies

Carole Scrafton (Me): Patient Advocate / Voice
Melanie Capewell: Group Head Commercial Development, Synlab International – Diagnostic representation
Jesus Sobrino: Spain and Portugal UCB Area Head, Global Patient Experience Lead – Pharma representation


When Giselle Quartin Head, International at ‘eyeforpharma’ contacted me about being a speaker at eyeforpharma Barcelona 2019 I was deeply honoured for the opportunity to get patient voice onto the stage. This didn’t come without fear and anxious moments and my journey onto the stage in Barcelona was indeed quite an emotional one as I frequently couldn’t figure out if I was understanding the topic for discussion correctly. In fact these feelings continued right up to the lunchtime before the panel took place.
Whether I was understanding it in the correct context was my main issue as the topic for discussion was such a complex one with many ways to interpret it. Add to that the fear of messing up through having memory relapses whilst on stage, and forgetting what it is that I wish to say. Having your mind go completely blank and not being able to speak is bad enough in my normal day-to-day life, but under the spotlight the fear of the embarrassment of it all creates a ton of anxiety that then needs addressing. Having social anxieties and learning how to ‘manage’ them in such a massive crowd of people with everyone looking at you is only for the bravest amongst us.

Why do I admit this?

The answer to this is an easy one because my peers, who are like me, new to the conferencing scene, and circuits, as patient voices all have these fears. Therefore, sharing them and how we approach dealing with them helps us to learn from each other and improve how we take on the tasks that we are asked to do. It is only natural to be a little nervous and to question your own abilities, and understandings when you spend a lot of time ‘fatigued’ from chronic illness, which can affect memory recall and cause ‘brain-fog’. The last thing we wish to experience is an episode of this when in the middle of a panel discussion at a high profile conference such as #efpBarca.

However, I get around my anxieties by practising meditation for weeks prior to an event to help keep me calm, centred and co-ordinated in the mind. Meditation is a valuable coping tool for me and one that I have used for many, many years. Of course it takes years to find your own perfect method of meditation and to teach yourself how to truly engage with it. For me it also helps with pain management.
So! knowing that I could get control of those sides of things I could focus on getting my head around the topic for discussion.

I won’t lie to you, I entered the pre-conference call regarding this panel discussion feeling really nervous and unsure of my input that I’d spent months preparing. After I’d heard Jesus and Melanie explain their ideaologies I was left asking “where do I fit into all this?” which led me into being accused of not preparing for the panel or phone call by the panel moderator. Naturally, this sent me into defensive mode where I needed to stand up for myself and ask to be given a chance. After-all I had spent months preparing for it. It soon transpired that I wasn’t the only one having problems so that made me feel a lot less stupid than I’d been made to feel. My fellow panellists and I had a quick discussion to understand how we could connect our thoughts and then it was going to be Barcelona before we’d speak again. Because I’d been put into defensive mode my memory wasn’t working so great, so after the call I wrote down what my thoughts about the topic were and then e-mailed them for the others to read. This was essential for me because there was no way I was going to be deemed incompetent for not truly understanding something and daring to ask about it.

Again, I won’t lie to you! I still did not feel particularly confident and contacted Giselle to ask if I’d seriously gotten the wrong end of the stick!? Giselle’s response was that I should trust myself more… and she was right, she really is great at supporting the patients that come to speak, and her reassurance is always very valuable.
Once in Barcelona, I met with our moderator to discuss things over and rectify misunderstandings that had been made during the conference call. Plus, as panellists, we met with our moderator Kathy Barry to discuss things over before we went on stage to make sure we were all on the right page. This is something we were all glad for because it was reassuring and boosted my confidence, as well as helped us as a team to organise how we would approach the disussion. We all had different thoughts in different contexts in relation to the topic, and, how they would marry on stage was an important factor to get right. Even the moderator needed to fine tune her questioning for guiding the discussion.

A very complex subject for us to be tackling but we pulled together as a team and headed off for the stage.

Giselle’s response was that I should trust myself more… and she was right, she really is great at supporting the patients that come to speak, and her reassurance is always very valuable.

EXPERIENCE /REVIEW: Panel Discussion | PRE-CONFERENCE – Why do I admit this? | Carole

Panel Discussion

After a brief introduction by the panel moderator Kathy Barry who was also Chair of the patient track that afternoon, she began the discussion by opening up the floor to Jesus Sobrino, from UCB, by asking…

“What has UCB been doing to understand the unmet needs of patients?”.

UCB are at the forefront of patient engagement so Jesus explained that at UCB the question they always ask is “is it adding value for the patient? The answer is yes if it is improving the quality of life for the patient.
So, what they have been doing to understand the unmet needs of patients. Firstly, they have to understand what is the patient’s unmet needs and how do they quantify them. They believe that following an A-B-C format doesn’t really capture the needs but by speaking to patients directly you can get more quantifiable results.

Through the use of AI driven research using a third party they managed to assess unmet needs across ten differing therapeutic areas. (Recently published in the ‘New England Journal of Medicine’). Classically unmet needs are catagorised into being clinical / emotional / social / lifestyle / economic. 80% of results fell into emotional. social and lifestyle unmet needs. The top result was needing to understand how side effects could affect their lifestyle, second was wishing to connect with others like themselves and thirdwanting an understanding of their disease. These are based on facts and not beliefs! they then looked at how they could help patients with these unmet needs.

Jesus explained how they realised that engaging with patients as soon as they are diagnosed and starting treatment. It is the best way to initiate the relationship, and then to follow that journey with them as patients because at the start of their journey is when they are most vulnerable, full of fears about treatments and what to expect.
UCB are ‘collaborating’ with patients to co-create new solutions to their own problems as the treatment occurs. A patient’s health data tells them what is the right solution / treatment, whether it is right for that patient. At UCB they recognise the scope for communication via varying channels across social media, but also through using more traditional methods of face-to-face too. In essence they are creating individualisation of patient support.

He also described how social media provides plenty of channels to communicate with patients, how health apps provide information and meeting with patients to develop a level of trust with them as a means of building long term relationships help with patient engagement.
Technology is making communication with patients easier and AI combined with deep learning is helping to create more precise data results for sorting out more precise medications and treatments for patients.

When asked by Kathy “What can pharma do to better support patients” Jesus answered there was a need to collaborate with all stakeholders and to work on co-creating proper patient support sytems with them for the patients ensuring they are not isolated.

Jesus also discusses how patients are often stigmatised within the school / work environment so it is useful to help allay those stigmas through education within the educational facilities and workplaces. They run an epilepsy program for example that teaches schools about the illness and how it affect patients. The kind of treatments they need and how people can further support their friends, and colleagues, as they learn to deal with their newly diagnosed diseases. UCB have also worked with football clubs on awareness campaigns and currently regarding families they have a campaign with patient associations called the ‘Today I Can’ campaign which is run across social media channels.
The key point that Jesus made was that everyone just needs to engage with patients more than they do, and it’s not like companies don’t know where to find them!

When it comes to diagnostics I admittedly don’t think about the processes very much, this is something that patients as a rule don’t acknowledge because the processes aren’t discussed in the consultancy rooms. Melanie Capewell described to us that it is not easy for them to engage with patients because as a profession they don’t get to see them., only analyse and test tissues for diagnostic purposes.

Kathy asked Melanie, “What can the diagnostics industry do to deliver value to patients?

In order to answer this Melanie had to, firstly, explain a few things. In short most people know that the diagnostics lab deals with the analysis of bodily fluids, and body tissues, for disease diagnosis and Melanie states that regarding patients they actually follow the same trends as pharma.
Patients are becoming more ‘proactive‘ about their health and wellness including diagnostics, especially if there is a possible chance of them having a ‘genetic’ condition such as breast cancer for instance. Melanie used ‘Angelina Jolie’ as an example, and of course this is a type of preventative diagnostics. Patients are sending off for tests without consulting doctors, or consultants, as a result they are driving the diagnostic industry, yet diagnosticians do not get to, ‘personally‘, engage with patients.

Melanie asked a great question: “Why do we test so much?
As patients we believe that we can act on the results such as exclude something, or quantify something from the data found. The data gives us an ‘actionable-insight’. However this doesn’t go without causing Melanie concern. She explained the patients’, and general members of the public need for online-consulting and searching for tests in order to better their health and well-being was indeed vast. There isn’t an issue with them wanting to find out about their health, but rather that the places they are requesting tests may not be very credible and people should be careful from where they send their tests for testing.

  • NOT all suppliers meet the required ethical, or clinical, quality standards.
  • What do the results mean?
    • Are they explained back to the patient??
  • Are the results relevant to the patient?
    • How would you as a patient know if the results are relevant?
  • What does the patient do next?
    • Do the results come with instructions for what the patient should do next?
    • Would you know what to do next?
  • If the testing company isn’t of good quality the patient could end up wasting their money, and end up becoming quite distressed as a result as well as not having the healthcare answers that they were initially looking for.

From this this Melanie went on to discuss how diagnostics could add value to patients.
She suggests making diagnostic tests more relevant, higher quality and more accessible to patients, where she continues to add that this is unusual for diagnostics as they normally deal directly with healthcare providers (HCP’s) From that, diagnostics would need introduce a new way to explain the data back to the patient, and what the test actually means. In her own opinion they need to embed back in dialogue with experts such as HCP’s, Lab techs, GP’s, fitness coaches, health-coaches, or nutritionists depending on the testing area.

Kathy then posed a second question to Melanie: “What avenues of collaboration with patients do you see for the diagnostics industry?”

Regarding collaboration with patients Melanie explains that areas such as drug adherence, drug on drug interaction and awareness campaigns into subjects like mis-diagnosis and underdiagnosis which could be caused by not following an appropriate testing format with credible resources. Melanie goes on to point out that pharma and diagnostics run hand-in hand so there really is no reason why collaboration couldn’t happen, instead of following each other they could work closer together and not so far apart.

When you consider things such as cancer testing, cancer ‘indictations’ where they’re not based on the location of the cancer itself but rather the genetic-mutations instead. Looking at ‘companion diagnostics’ which is how these mutations are found, interaction between diagnostics, pharma and patient is required during the whole process and is also bordering on personalised medicine. Also, ‘pharmacogenetics’ to understand the rate a drug is metabolised and pharma give drug treatments in relation to a patient’s genetic profile, where the dosage of a drug is chosen to suit you as a patient, and the question of whether the drug right for you? are all considered and eventually you could end up with made-to-measure medicines. Both of these are recognised as moving towards the area of personalised medicine, which was a key element to this panel discussion.

We all must remember that the normal process of diagnostics means that a prescriber orders the test, gets the result and then orders the treatment but it doesn’t involve any true interaction with the patient. Being able to work with pharma using deep learning technologies together they can begin to offer a service to patients that is personal to them and therefore increasing patient value.
The next thing to consider is the fact that we now live in an era of ‘pro-active’ patients who don’t want to wait for doctors to refer them for tests, they want cheaper options and faster results, especially if ancestry shows genetic disease. There has been a demand for an International Diagnostic kind of registry to be used for rare diseases where blood is banked… basically like bioresource centres. (Even I have my blood sample stored away in one.)

In this modern era of medicine patients understand the value of their own data, tracking data is becoming easier through the development of medtech/healthtech gadgets and wearables, digital apps and technologies. However, as Melanie discusses patients are frequently holding onto this information because they do not understand what it means, what the results are saying about their health. Diagnostics through the utilisation of ‘deep-learning’ can analyse data for patterns that can be translated and dialogued back to the patient. Diagnostics could develop a platform for sharing information, raising awareness and co-work with pharma and patients and with patient consent it could pave the way to pointing patients towards relevant clinicial trials. Very interesting discussion from Melanie that was quite enlightening regarding the diagnostic industry.

Last to speak was myself and I have now listened to the audio a couple of times and I sound like a stuck record explaining over and over during each answer how education and training is top priority.

My message was loud, clear, and insightful, but was it enough? Admittedly, I still do not feel particularly confident that I expressed all the things that I wanted to. Did I do enough? I was responding to Kathy’s questions which in fairness all led to the answers which I put forward, but there were huge gaps regarding collaboration and my thoughts on that because the discussion wasn’t really geared towards me debating the topic but rather just to villify my panellists suggestions.

Kathy asked me “How much of an awareness is there among your fellow patients of the diagnostics industry?”
Well my answer was clear, “not a lot, and not enough”.

Kathy went on to ask, “After hearing the comments from Melanie and Jesus, did I think the diagnostics industry could also play a role in supporting patients with chronic illness?
Naturally the only answer here is, yes! It was a closed question!!??
Regardless of that I went onto to state that patients need to be educated about what diagnostics do, what it involves and information needs to be in a patient friendly language, something that even Melanie and Jesus had already pointed out themselves. Diagnostics isn’t just about testing blood!

Kathy’s next question referred to “How is there a disconnect between the languages used within the industry and the patient community?” “Did I have an example of this?” “How could it be addressed?

Training and Education is an issue that I strongly advocate, including “Who is going to take charge and start creating one universal patient-friendly language?”.
It is really annoying that each sector of the industry has it’s own little jargon’s and languages, terminologies that all mean the same thing, but to patients it just confuses us.

I have read an article written in 2014 Titled – Nearly half of patients do not understand medical language, (By Sarah Knapton, Science Correspondent5:54PM BST 18 Jun 2014).

Five years later and we’re still asking for someone to make the change and rectify this problem. Sorry, now we are actually ‘shouting’ about it and getting a little agitated that no-one will take charge. It’s not as if we can do it by ourselves, and I’m fairly sure that any attempt we make won’t be good enough, so it needs to a be a collaboration of co-creation utilising ‘all-stakeholders’.

Surely, it is possible to organise such a steering committee / Advisory Board to kick this project off.

Who from the industry is brave enough to join the group to initiate a project into developing a ‘Universal Language’?

Which people from Pharma will step forward to start it off and how will other members / stakeholders and patients be added, or selected?

If you want to reach perfect patient-centricity, or person-centricity, then addressing this language problem would be a great start, so please can someone take charge and set it in motion. Training and education is pointless until it is addressed and with respect to ‘strategising’ doing it now will make future developments for patient engagement much easier.

Naturally, during the panel discussion I was also advocating how ‘using’ and ‘involving’ all stakeholders can be of great advantage –

In answer how to address the problems of ‘language’ and ‘education’ within the industry and how to make things work better I coined an old saying from my childhood, “Why have a dog and bark yourself?”. Building lasting partnerships with patients will be desirable for all parties involved and during the process you are building a network of skillsets that when working together can help to create solutions, and keep the supply chain flowing smoothly. However, imagine what it could be like with other stakeholder partnerships added into the mix. I gave the example of Patient Focussed Medicines Developpment (PFMD) that I am fortunate enough to be involved in as a ‘voluntary’ patient representative from a patient organisation. Part of the work involved is related to patient communications, training and education regarding patient engagement and it is being designed by many patients, and professionals, whose skillsets are best placed and matched to them personally for tasks. There is a lot to be learned from the processes they are currently using.

The long and the short of it, is this…

How could diagnostics and pharma possibly collaborate and engage with us?

A very good question for us to try and come up with a solution for. When it comes to the suggestion of digital tools, and apps for connecting via means of data collection, and diagnostics that is fine tuned via deep learning processes, it isn’t real one-to-one, or face-to-face engagement. Plus, the fact that it takes time for patients to input the health data and patients don’t always stick to it causing gaps within the analysis that could give false reports. It is sharp becoming no secret that patients get fed up of the alerts and notifications filtering through to their devices, then there’s the fact they have several conditions so they end up spending a lot of time dealing with health apps all day.

Personally, one of my main concerns is the obsessive behaviour that constantly tapping onto apps also creates as patient’s won’t take no for an answer, and must just check this every 2 minutes, reset it here and there. It will likely cause repetitive and compulsive behaviours until they get the answer they want, whether it is right or not! Medtech devices are life-safers for many, but in a lot of cases just another gadget to others which makes them loook trendy, or cool, that will become as addictive as the pills they get prescribed, until the fad disappears.

Plus, if using tests, and results, from send away kits from ‘non-credible’ resources to take along to the doctors it could cause upset to their doctor-patient relationship when doctors don’t accept the test results and then refer you onto to somewhere else for the test. Another sad aspect is the doctor not believing you needed the test to begin with, not believing you have reason for true concern to warrant such erratic healthcare behaviours. Stigmas will never go away completely just change with their environment! It is easy to see how patients could become alienated from real medical professionals and becoming reliant on any online services for their health which is something that Paul Simms predicts in his ‘5 Bold Statements’ as Amazon Prime drives forward, and Dr Google, take over healthcare, and not to mention Apple Apps

Patients need to be educated about the tests and diagnostic processes and the best people to do that are in fact diagnosticians. Would they create patient information, run training courses to provide ‘qualifications’ for HCP’s such as GP’s and Nurses so patients know they are speaking to proper certified people about the diagnostics. Melanie clearly says that this would be part of her plan and is something we both agree on.
We also agreed on the fact that patients become tiresome of inputting data into apps and technologies and Colin Hung recently wrote an article about ‘alert-fatigue‘, that you can read via the link below, which highlights the very point that both Melanie and myself tried to make.

Jesus gave a great insight into what wonderful things UCB have been doing regarding patient engagement and even he stated that training and education was needed in certain areas. Regarding diagnostics he discussed how UCB interact, use AI and deep learning technologies to help create treatments that are more personalised for patients with ‘epilepsy’ and the drive that they have to pursue it and the end-game of personalised medicine within differing therapeutic areas. Patients are literally at the forefront of their work and co-creation is something they aim to keep doing.

Everyone appears to know what needs to be done, as a patient my ‘ideologies‘ were all about patients not understanding the diagnostic processes, or not needing to because they’re only interested in the end result. However, I believe that through using patient platforms / community maps for sourcing patients for clinical trials, and engagemement opportunities, it would increase their levels of engagement. Plus, they could easily create patient communications as ‘educational’ and ‘marketing’ tools to raise awareness of diagnostics and what it involves, plus, what do your results mean? I have explained the best that I can ‘what’ I think.

I must point out that regarding health apps, I did state that, personally, I don’t use them because there are just too many to keep up with.

Patients like me need an app that allows them to deal with everything all on one ‘App’. Information is then correlated better giving more accurate data set results. We have multiple conditions to record, it is pointlesss having individual apps because our health data cannot be classed as giving true results without having the proper correlations of them side by side and how they interact and affect each other. Deep learning tools can help to make these correlations, however at the moment it is unable to assess huge masses of data which is why personalised medicine is a long way off yet for multiple conditions! One of the reasons why PatientsLikeMe is so popular is because it gives us that opportunity as well as access to expert advisors, health information & the support of others. All the individual apps do is confuse & cause me irritation!
The collection and analysis of health data towards developing personalised medicine is fast becoming at the forefront of diagnostics and patients receiving more precision based treatments in accordance with the data inputted into wearables etc. For people with singular disease it will be great progress but those of us with multiple conditions we will just have to wait a while longer!
Yes, I am looking forward to the day that precision medicine can help me, and I firmly believe that one day it will. However, I firmly believe that ‘currently’ it is a long way off.

It is time to break the ‘silo’s’ and recognise the multi-morbidities for what they are, we need more from our data and we’ve been asking politley so hopefully, it will change and develop soon for us?
Here’s hoping eh!

From left to right

Carole Scrafton, Melanie Capewell, Jesus Sobrino & Kathy Barry.

If you wish to listen to the discussion you can subscribe to eyeforpharma’s on-demand services

If you have any questions about On Demand, or any of their reports, email ondemand@eyeforpharma.com and a team member will get back to you.

Post-Barcelona I discovered a ‘solutions’ ‘system-change’ company that has created a ‘solution’ model that uses people from varying job sectors to utilise their ‘skillsets’ at the right places take a look at Syntegrity’s model via the short video on their website, purely to recognise the 3D elements of it and the scope of variable skillsets that sits within it…….


My experience at ‘eyeforpharma’s 17th Annual conference at Barcelona’ was as a volunteer patient advocate and I got to go through their ‘patient policy‘ as a speaker and for being a steering committee member, roundtable moderator, and co-chair for the Impatient Conference that sits on their platform, a pharma conference designed by patients for pharma.

The policy helps to pay for accommodations, travel and other expenses in alignment with contributing in some way such as doing a speaking role, or some other role wthin the conference.

You can read this policy, and see how it could work for you if you’re considering taking on a new route for your advocacy work as a patient, via the button link below…
… and if you’re interested in ‘speaking’, or ‘contributing’, please let them know.
Thank you ~ Carole

eyeforpharma Patient Policy & Mission Statement

Eyeforpharma – Mission statement:

Our mission is to make pharma more open and valued.

The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.

We believe the industry must focus on a business model combining service with product, with patients at the center.

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