Almost there! Will you join us to talk about ‘Reaching patients and educating patients using agile social media strategies’​?

Please note that this article will take you on a ‘journey through the past‘ in order to ‘engage with the future’ based on my own personal experiences and learnings since my first appearance with ‘eyeforpharma’, (now Reuters Events Pharma), in Barcelona March 2018 #efpbarca. A bit of a refresher!

Originally posted on LinkedIn but for those of you without access I have chosen to share via our website as well.

Disclosures: In return for taking part in this panel discussion Reuters Events Pharma are adhering to their patient policy by providing me full access to the event and also with an honorarium for my time. I agreed to write an article and also to help promote the event across FibroFlutters Social Media Network. The views reflected in this article are my own and not those of anybody else.

Pharma & Patient Summit by Reuters Events Pharma | 15 – 16th September. 

It is no secret that I have been advocating for ‘pharma’ to utilise social media in order to find and engage with patients, so when asked if I would join this panel I happily said ‘yes’.

Panel: How to reach and educate a wider range of patients with an agile social media strategy

  • Social media moves pretty fast. Stop and look around once in a while to engage target patient populations more accurately on appropriate platforms
  • Improve trial enrolment by engaging with a wider range of the patient population, including those beyond the traditional realm of insight
  • Explore how to navigate compliance whilst creating two-way communication and gaining maximum patient insight from social channels
  • Capture true patient voice with social listening and avoid assumptions

Social listening is the process of monitoring social media channels for mentions of your brand, competitors, product, and more. Tony Tran March 3, 2020.

Social listening gives brands an opportunity to track, analyze, and respond to conversations about them on social media. It’s a crucial component of audience research. 3 Mar 2020

The fact that the discussion will approach how to use social media strategies to engage and educate patients shows that there has clearly been progress.

Pharma appear to be open to utilising social media platforms, and the patient communities that use them, for the purpose of patient engagement and therefore improving their drug development processes as a result. If the drug development processes improve then so must the levels of patient recruitment and patient retention for clinical trials, and drug discovery. This of course is ‘my opinion’, and one that I have advocated publicly since 2018!

Looking at my quote and recapping on prior advocacy regarding the utilisation of social media to engage with patients.

Now that you have found ‘patients’ on social media it is crucial to know how to communicate and engage with them to improve your trial recruitment and retention. 

It is a time to educate them about their importance to discovering new treatments, and each other about the roles that you have within the drug development process!

Since my first appearance as a patient advocate with eyeforpharma, (now known as Reuters Events Pharma), in Barcelona 2018, there have been a couple of times where I have drawn attention to social media and how it can be useful.

At that particular conference I was explaining the way that through developing a ‘communications avenue’ for our members, and followers, I had accidently created a multi-channeled network of social media platforms, our ‘Super-Highway’… …ironically, just as Agnitio was releasing its multi-channeling software ‘RainMaker‘ and presenting it at the same conference. Thinking about that and how something like it could easily create a way for pharma and patients to connect, and also considering how I was also there to advocate for the inclusion of carer voice and the utilisation of ‘all stakeholders’ the process of multi-channeling became even more attractive. It was during the conference that I realised what I had, ‘inadvertently’, developed whilst advocating for a multi-disciplinary approach to medical healthcare for people like me who have multiple chronic conditions..

You must remember that what I say above is in relation to my first-ever ‘pharma’ conference and I was wearing many hats #notjustpatients and caregivers, but also that of research and the development of new treatments. I had a giant passion to unite clinical and medical research with pharma through collaborative means and by using social media to find and engage with patients in a similar way that I had created myself. At the same time I was engaging with the NIHR.

At the time, I was also quite brazenly stating that it was time for pharma and academia to stop throwing their toys out of their prams and to start getting along with each other. Through collaboration I believed that finding new treatments and the future of drug development would become easier and the progression of drug discovery would ensue.

Following on from there in the Autumn 2018 was the eyeforpharma Patient Summit where I took part in a panel discussion: Candid patient perspectives on the good, the bad and the ugly of service design.

Patient Summit Panel discussion October 2018 eyeforpharma

Predominantly, when the subject of ‘where to find patients?’ came up I argued as a ‘patient voice’ that if looking for patients then social media is where you’d find us. Afterall, it was indeed a ‘true’ fact with patient communities everywhere on Facebook, for instance, and an easy example to put forward, but with other platforms such as Health Unlocked and Patients like Me with access to patients too. But the argument that came back was the ‘legitimacy’ of the patients giving / sharing data from within such groups on social media platforms could scupper the chances of gathering true ‘Real World Data’, meaning they didn’t believe the data could be classed as credible enough.

Fair enough!

However, rather rude, in my opinion, to tar all groups and communities with the same brush. If they looked deeper and communicated better they would find suitable patient pools that they could access, especially for surveys when gathering illness and disease information at the beginning of trial design. Despite this though the question, somehow, was developing into how and who? And not where? so at least a little progression had happened.

Oh! and we mustn’t forget that analysing said data that was being collected was not an easy process at this time either. Processing large amounts of data was only possible in smaller amounts… hence the data silos developing of individual therapeutics and symptoms etc, and no ability to process lots of health points of data at once. Processing all the available data was required for correlation to produce more precise results. This meant a lot of valuable and key information wasn’t being analysed it was just being collected and sitting there doing nothing. So! using social media platforms was in theory a great idea but it just wasn’t feasible… yet.

Some other points that I had to make during that panel discussion included the facts that pharma “knew what to do and it was time to get on with it” with education high on the agenda for all parties involved and #notjustpatients! Of course, it would be careless to not reference that the feasibility to bypass regulations was clearly a ‘bottleneck’ along with the problem of how to gather and process all the data needed. Basically, despite the progressive development of AI technologies, through deep and machine learning processes / algorithms, it still wasn’t possible to analyse large collections of differing data and so there was a build up of ‘data silos’ that needed broken down. The prospect of utilising social media was obviously a daunting one as a result without appropriate technology for data analysis being available!

Taking such matters as Education into the usefulness of social media as a communication tool for a number of reasons including clinical trials. Hence the phrase ‘It is time to educate to medicate’


  • What they were?
  • Where to find them?
  • and most of all, how pharma could engage with patients using said social media?

This of course fits into the subject areas of achieving patient-centricity through implementing strong patient engagement strategies, and in my opinion patient communities on social media platforms are a great place to introduce such educational communications.

However, my phrase ‘educate to medicate’ also referred to the need for companies to educate their employees about social media.


  • What is it?
  • What can social media be used for? What is its purpose??
  • Why is it important for the future of patient engagement and patient centric ideals?
  • How embracing social media would help them to build trusting, long term, relationships with patient organisations and communities.

You can read about my experience at the 2018 eyeforpharma Patient Summit via the link at the end of this article. I do make reference to educating about the clinical trial process and what it means and entails throughout this article.

Patient-Centricity: An Appraisal | Ross Davies
It has highlighted the gulf between patient compliance and patient experience, but has it broadened the focus beyond disease states?

Last year in an article by Ross Davies published in January 2019 by eyeforpharma, it discussed patient compliance, experience and retention in relation to ‘breaking down data silos’. 

In the article I do speak quite fervently about how social media can help to play a role in improving these areas of interest for the pharmaceutical industry. You can also read the viewpoint of Jen Horonjeff (Founder & CEO of Savvy Cooperative) who explained that social media was not the only answer with which I agreed and you can read that article to gain our perspectives as we gave them our ‘appraisals regarding how patient-centricity appears to show a huge gap between ‘patient compliance’ and ‘patient experience’ via the link at the the end of this article.

Nowadays, when I speak about patient compliance it is strongly related specifically to clinical trials and it always involves pointing out the fact patient experience suggests that many people:


  • A) Do not know what a clinical trial is?
  • B) Do not know where to find clinical trials?
  • C) They do not understand the language enough and it puts them off continuing.
  • D) They cannot stick to the drug regimen and when that happens, they drop out.
  • E) Commuting to trial sites is not always feasible due to chronic illness and / or mobility issues, or maybe they have medical equipment that makes it difficult to travel to the site. Having no caregiver to assist them is often a problem too. 
  • F) Lack of trust with pharma and also their personal data.
  • G) The patient wants compensated.

Clearly the need for pharma & clinical research companies to educate patients is required! It is also beneficial for patient organisations to empower their members too, and Marie a writer with connection to ‘The Patient Empowerment Foundation’ and one of my fellow panellists will talk about patient empowerment and share her insights about it, and patient education, on the 15th September.

The Patient Empowerment Foundation is a Geneva based, registered charitable foundation (CHE-301.369.308), established to support the education and empowerment of patients, family members and caregivers affected by cancer and other chronic diseases.

The points A-G above lead to the questions:


  • a)      How do you reduce these problems? How can you educate using social media strategies?
  • b)     How can you build a trusting relationship and respect the privacy of the patient?
  • c)      How will you collect the data you need and then how will you compensate the patient?
  • d)     What can you do to alleviate the commuting issues?
  • e)     What can you do to help support the patient in taking the drug / treatment?
  • f)       How can you better educate patients and improve recruitment and compliance/retention?
  • g)      How can it be made easier for patients to learn about what trials are happening?
  • h)     Now that you know that social media can play a large role in the solution how can you implement your strategies in the right places?

Leading on from that it is easy to assume that the ‘early development’ and ‘preclinical’ phases of clinical research were taken into consideration. Then again, one could also easily assume that were they were just ignored as being ‘key elements’ of the drug development process. Patients were at the time asking to be ‘involved’ from the beginning of clinical trials during the early developmental phases, and to be involved in the trial design process, but, sadly, back then it ‘appeared to fall on deaf ears‘, well for the most part anyways! The industry still had many who didn’t see how it was counterproductive to introduce patients so early on in the drug development process. Again, those ‘need to educate’ flashing lights are triggered!

Regulatory hurdles!

Okay, regulations and policies such as GDPR for example and data privacy laws did make it a bit awkward so the industry can be forgiven a little bit because of that. Plus a host of other regulatory bottlenecks preventing the pharmaceutical industry from engaging with patients using social media… what you can and cannot say on your posts for example.

Admittedly this is not my area of expertise, but during our panel discussion in September there will be a voice, or two, that can tackle this topic of conversation.

Covid_19 and the push forwards of digital health technologies and telehealth.

Very recently as part of an educational webinar series with mdgroup we did in fact speak quite candidly about all of these factors that I have mentioned so far, within this refresher article. Particularly with reference as to ‘how to improve the patient experience within the clinical trial process’. The discussion included the use of virtual meetings, appointments and telehealth, especially since the coronavirus outbreak and its impact on clinical research.

Virtual and remote healthcare could all be included within your overall communications strategy that will also involve your social media strategies. Most of all, the utilisation of ‘social listening’ to truly understand what the needs of patients are. Listening to patients as a crucial element of the clinical trial process and why it is important in order to improve the patient experience and to meet the unmet needs of the patient!?

Again, patient communities can provide this type of information and as it has been said by many before me, social media is where you find those patient communities whether they are on Facebook, Health Unlocked, Patients Like Me, or Inspire, Patient Worthy & even What’s App… just to name a few platforms. There are many, many, things to bring to our panel discussion regarding this on 15th September.


  • On July 9th 2020 I joined Andrew Schorr Co-founder and President at Patient Power LLC and Nuala Ryan Clinical Research Consultant in a panel discussion How Can We Improve the Patient Experience in Clinical Trials?
  • You can access this and the recap via the link at the end of this article.

The Covid_19 pandemic has pushed the telehealth industry forwards and is now being utilised widely by healthcare companies. It is also a huge consideration for clinical research companies due to the lockdown measures curtailing many research studies.

If patients can’t come to you?… Then how do you go to them?

Social media strategy and patient empowerment also play a role in this and I am sure that we will talk about it on September 15th during our panel discussion alongside how data collection and storage is used in conjunction with social media platforming.

‘How-to’ engage with Patients

Another ongoing project that I am involved with is with ‘Patient Focused Medicines Development‘ (PFMD) and in early 2019 we began a massive project with multiple working groups of multi-stakeholders. The project actually began in 2018 to gather information first with the ideation to create ‘How-To’ training guides for the purpose of providing educational tools as to how to implement patient engagement practices into your clinical trial designs. (All with patient-centricity in the background)


PFMD Contributors’ Network | PFMD’s HOW TO modules for patient engagement

Digging deep into the clinical trial processes and designing it to incorporate true patient engagement practices.


  • What were those practices?
  • What did they involve?
  • Why were they important and all based upon a massive gap analysis undertaking that highlighted the important factors to consider which also involved the above. 

More importantly I must say that I am in the Early Development and Preclinical Working Group which involves trial design and where to locate patients and how best to engage with them. This How-to module has been undergoing public consultation and will soon be published. The PFMD alongside PARADIGM, PFDD, EUPATI and others are all working towards developing tools to help with patient engagement practices for multi-stakeholders and not just pharma, or patients. CISCRP also provide educational tools too for teaching purposes regarding clinical trials.

‘Made with Patients’ is one of PFMD’s main slogans, but in essence they work at a multi-stakeholder capacity and social media helps them to reach appropriate targets for their tools. This includes a platform that they have purposefully built that acts as their Patient Engagement Management Training Suite where clients can easily access a range of training toolkits and they are currently finalists for a Reuters Award with this educational initiative for ‘Most Valuable Collaboration’ for Patient Engagement (PE) Training – A multi-stakeholder collaboration to build a patient engagement training for industry professionals.

It is my belief that now the tools are being built they need to be brought to those who need them… in other words… patients and #notjustpharma!!

You can access the workshop session ‘PEOF 2020 – How to engage patients in the early stages’ that we co-presented on July 26th at the Patient Engagement Open Forum at the end of this article.

Backtracking now to the time of eyeforpharma Barcelona 2019 when ‘multi-channelling’ was slowly progressing into ‘omni-channelling’ so the idea of social media networking was improving to include the need for connecting all channels and ‘cross-networking’ was fast becoming a more prominent terminology. So! Okay, it was clear to see that companies from the pharmaceutical & medical healthcare industries were engaging with social media and had begun to use it more for health and medical communications. 

One major issue though was language and the fact that patients do not speak ‘pharma’, or ‘academia’, so another hurdle was brought to forefront again, it was frequently there… and frequently dealt with over, and over again. Differing jargons that just sent confusion through communities enough to put them off getting involved because most people as ‘poorly people’ require ‘easy to read’ communications. Admittedly, this used to grind my gears somewhat because it felt like I was speaking double-dutch when trying to explain it.

However, as a tool for patient engagement I did not believe that the use of social media was quite there yet! In fact it still felt like there was a reluctance to believe that engaging with patients through social media would be a good idea. This time the factors around the legitimacy surrounding the collection of ‘real data’ was more of a problem than the compliance and regulatory aspects, although they still played a huge role. By this I mean that there was a reluctance to survey patient groups that were unregulated, not governed by legitimate organisations / charities and were therefore without a stamp of approval. Why? Well because if their participants were with registered organisations then they had been vetted of sorts and deemed to be suitable candidates. This, unfortunately, is a problem and one that FibroFlutters has difficulty with. We cannot become members of many appropriate organisations due to not having official status as a group for chronic and rare diseases. Therefore, I am working on fixing that problem for us at this present time. 

Companies and institutions had a tendency to only look for groups who were registered with organisations, or patients who were members of patient registries. This is not a massive problem for us as patient group leaders to be honest, it is just frustrating educating members as to the importance of why they should register with these things. Also, educating them as to why clinical research is important, how new treatments will not evolve without people like them participating in trials. Many are apathetic and need a lot of encouragement, which could be made a lot easier with help from the companies and institutions who run the trials. 

Not all patient groups can connect to bigger organisations, or do not wish to become charities just so they can… meaning you could be missing out on gathering key real world data from many patients as a result. 

Moving on…

On May 26th this year I was quoted in an article ‘How medical affairs can amplify the patient voice’, published by Anju on May 26th 2020. The quote implies the need for social listening.

Making assumptions does not bode well with patients, we much prefer to be heard and acknowledged.

“…pharma is very particular about how patients should take their medicine, but this doesn’t necessarily align with patients’ lived experience. Scrafton says part of the problem is that pharma has not traditionally focused on a holistic understanding of the patient experience.”

Anju Life Sciences Software:

Leveraging the Anju Bus integration technology, Anju will add complementary solutions to YOUR environment and create a tailor suited PLATFORM that perfectly meets YOUR needs…introducing the Anju PERSONALIZED PLATFORM™

Now I bring you back to my quote.

Click the poster to check out the agenda & register for the event. Remember patients can attend for free of charge

Taking what I have said and moving forwards.

Building relationships with us takes time and is why I believe engaging with us at the earliest opportunity is crucial, and why seeking us out on social media is important and should be part of your trial design strategies. Involving patients from the start and building those relationships early-on will surely improve the chances of them staying on the trial and also through word of mouth, the old-fashioned way of marketing. Other patients will gain the confidence to register for trials through peer-to-peer encouragement and the appropriate education from you as the drug developers / researchers. 

Education does need to be a combined effort and not just between the patients and trial research teams. All stakeholders should be included in the process and utilise the time to educate each other about what each of their roles are within the trial process. Using appropriate lay language, appropriate methods of communication, and respecting the needs of the patient always, it is possible to create partnerships that will be long-standing… and trusting. 

Pause for thought…!

  • What is the role of Digital Health as part of your Educational Toolkits in your social media strategies?
  • What is your definition of social media, what does it mean to you? What is your understanding of social media??

Some relationships can be with people just like me who can help to get your trial recruitment messages out to the right patient communities, across our own social media networks, or even to all stakeholders depending on what information you re seeking, or what stage of the trial, or trial design, you are at. Teamwork and using multidisciplinary approaches are a great idea! Also, social media marketing and networking should play a huge role within your social media strategies and there are many ways that they can be advantageous for you. 

Remember, just because you now know where to find us does not mean that we will necessarily open our doors to you. As I stated earlier, many patient groups are not connected to charities and bigger organisations so the following questions and statements must be considered. Do not ever assume that you will be welcomed easily as this may only be the case a few times! The reality of the ‘lack of trust’ must always be remembered.

  • How will you get our attention? Even new patient members often have to answer profiling questions before being allowed in!
  • How can you initiate dialogue with patient communities without causing offence? That is being careful to not approach as product selling opportunists when wanting to recruit patients for product reviews!
  • How can you use ‘best practices’ to engage and involve patients? What protocols has your company developed regarding patient engagement and social media? Do you know your company’s ethical limitations, as well as regulatory??
  • Can you be trusted? remember! we will profile you!!

Now I could go into a lot of ‘how-to’s’ with you now within this pre-conference and pre-panel discussion article, but then there would be nothing left to talk about on 15th September.

Please remember that this article is for the purpose of raising prior discussions as a ‘refresher’ regarding the development of using social media as a tool for patient engagement with a view to looking back before discussing the future of social media strategies at the event. All views and experiences are my own.

Introducing my fellow panellists who I am joining for this panel:


Marie Ennis O’Connor | Panel Moderator | Writer | Patient Empowerment Foundation


Manu Field | Lead, Social Media Strategy | Roche


Danilo Pagano | Vice President, Digital & Customer Engagement | Lundbeck


I’m looking forward to joining these fantastic people and learning their thoughts on this subject as each of us do bring different mindsets, and experiences, to the discussion. My patient perspective and opinions are only part of it and I am certain that Marie, Manu and Danilo will all bring valuable insights for you to hear on 15th September.


Many thanks for reading and we looking forward to seeing you at the event.

Thank you to Cameron Kunyeda for inviting me to take part in this years Reuters Events Patient-Pharma Summit event.

Come join me and REGISTER NOW!

Patients can join for FREE!

Nothing about us, without us!

At Reuters Events Pharma, we practice what we preach. The Patient Summit agenda was developed with patients, will be delivered with patients, with audience participation from patients.

Pharma & Patient Europe 2020
The importance of reducing the patient burden, ensuring patient-preferred trials, caring for vulnerable groups and proving that patient education has never been greater than now during the Covid-19 pandemic. Is this a hugely challenging time? Undoubtedly so. Yet it is also an opportunity for permanent patient-centric change.


Other articles / posts of relatable interest and website links:

Next Generation Online Health Communities: Data empowering patients and caregivers improves care and accelerates research Inspire

Next Generation Online Health Communities

Read the above article to learn how Inspire is constructing a new generation of health community where patients ‘paint their health journeys through shared data’.


How Medical Affairs Can Amplify the Patient Voice
MAY 26 2020

How Medical Affairs Can Amplify the Patient Voice

This quote below from ‘How medical affairs can amplify the patient voice’, published by Anju on May 26th 2020, implies the need for social listening.


“pharma is very particular about how patients should take their medicine, but this doesn’t necessarily align with patients’ lived experience. Scrafton says part of the problem is that pharma has not traditionally focused on a holistic understanding of the patient experience.”


‘Leveraging the Anju Bus integration technology, Anju will add complementary solutions to YOUR environment and create a tailor suited PLATFORM that perfectly meets YOUR needs…introducing the Anju PERSONALIZED


Patient-Centricity: An Appraisal | Ross Davies
It has highlighted the gulf between patient compliance and patient experience, but has it broadened the focus beyond disease states?

Patient-Centricity: An Appraisal

The above article was written by Ross Davies and published in January 2019 by eyeforpharma, it discussed patient compliance, experience and retention in relation to ‘breaking down data silos’. Mentioned in the article.


How Can We Improve the Patient Experience in Clinical Trials?

July 9th 2020 I joined Andrew Schorr Co-founder and President at Patient Power LLC and Nuala Ryan Clinical Research Consultant in a panel discussion 

How Can We Improve the Patient Experience in Clinical Trials?

You can also access the other webinars in this educational series by mdgroup

Please check out this

Valeria Nicoli-CarrVP, Patient Engagement and Recruitment, mdgroup will be delivering a 15-minute presentation as part of the ‘Pharma & Patient Europe 202015 – 16 September, 2020 · Digital Conference & Expo‘ event: 

‘From Patient-Centric to Patient-Driven Trials’.

In her presentation, she will discuss how we can further develop our understanding of patients’ needs and use this knowledge to truly put patients in the driving seat when it comes to clinical trials. She’ll be covering:

  • How the clinical trial paradigm is shifting
  • The role of the “informed patient”
  • How we can better address patients’ needs
  • What role each stakeholder will play in the future

Mdgroup will also be available to chat at their ‘virtual booth’ throughout the event, and would love to have a conversation with you about what we do, and how we can support your clinical trial patients.


PARADIGM, PFMD and EUPATI welcome you to the Patient Engagement Open forum – a series of virtual events where we will work together, in a multi-stakeholder context, to turn patient engagement into reality.

Patient Engagement Open Forum July 26th,

I co-presented the following session with Chi PakarinenNick HicksOana BERNARDDr Oleksandr GorbenkoMerlin Williams Carina Prelucan

  • Session A: How to engage patients in the early stages? (workshop) Access the >>>  Session resources
  • This has been undergoing public consultation and will soon be published.

LAST SESSION > September 10th

  • Session: PARADIGM Patient Engagement Toolbox & Patient Engagement Monitoring and Evaluation Framework.
  • SIGN UP NOW and check it out

NEXT SESSION > September 24th

Parallel sessions:

  • Session A: Patient engagement in clinical trial phase or/and in the regulatory submission phase (workshop)​
    Details about this session
  • Session B: From diagnosis to treatment and beyond: personalized medicine – what’s in it for patients and understanding patient needs to make it a reality? 
    Details about this session
  • Session C: How Patient Engagement Can Foster Access Through Improved Affordability? 
    Details about this session

Day 2 of the event see PFMD’s Nicholas Brooke on this Panel:

10:15AM–11:00AM (BST)WEDNESDAY

Panel: Create real working relationships with patient groups by aiding them to build capacity


You can read about my experience at the 2018 eyeforpharma Patient Summit mentioned within the article via this link:

Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe 2018 ~ My experiences, incl. Im-patient | Carole Scrafton

#chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe 2018



eyeforpharma Ltd by Reuters Events, headquartered at 7-9 Fashion Street, London, E1 6PX, United Kingdom. A registered company in England and Wales: 09823909.





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FIBROFLUTTERS CHRONIC, INVISIBLE & RARE ILLNESS SUPPORT

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Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK … 
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