Patients As a Key Stakeholder For Scientific Conferences

[00:00:04] Hi everyone and welcome to InformED. This is a podcast series where you will hear industry

[00:00:13] experts share their thought-provoking insights and lessons in the field of medical communications.

[00:00:20] This series is brought to you by ISMPP and is generously sponsored by MedBing Psychom.

[00:00:26] The opinions shared today are our own and they do not necessarily represent those of

[00:00:31] My name is Dawn Lobburn. I'm an independent consultant specialising in medical and patient

[00:00:36] engagement in medicine development and I'm your guest host for today's episode.

[00:00:41] Today we will be discussing patients at scientific congresses and conferences.

[00:00:46] I'm delighted to be joined today by Simon Stones.

[00:00:49] Simon is an experienced patient advocate and senior medical writer working at Envision

[00:00:55] Pharmagru.

[00:00:56] Indeed, for those of you who attended ISMPP earlier this year, you'll know that Simon

[00:01:00] was awarded the Rising Star Award for his great work to date.

[00:01:04] I'm delighted to welcome you today Simon.

[00:01:06] Thank you Dawn, delighted to be here with you.

[00:01:08] Okay, so before we really get into focusing on patients at congresses, can you just

[00:01:14] tell us a little bit about your journey to date and how you became interested in

[00:01:19] this topic?

[00:01:20] So, I was diagnosed with juvenile arthritis and inflammatory bowel disease as a child.

[00:01:24] So, healthcare has been a constant part of my life and those experiences inspired me

[00:01:28] to learn about my conditions and also want to help others.

[00:01:31] At the same time that I went to university to study biomedical sciences, I was

[00:01:35] invited to join a clinical study group in the UK as their first young person

[00:01:40] representative.

[00:01:41] And this was really at a time when patient involvement in research was an emerging

[00:01:44] concept, let alone the involvement of young people.

[00:01:46] So, I naturally joined in that group, struggled to understand why researchers

[00:01:50] were having these light bulb moments when you mentioned patient involvement

[00:01:54] because for me, I just assumed that research would be conducted in that way

[00:01:57] with patients as partners of every step of the way.

[00:02:00] Say to say, I certainly felt like a small fish in a big pond but I soon

[00:02:03] realised that amplifying the patient's thoughts in research was what I needed

[00:02:07] to do and over the next few years, I quite literally threw myself into

[00:02:11] research and patient advocacy, joining national and international

[00:02:14] groups mostly in rheumatology.

[00:02:16] And one of these opportunities was to work with a proactive and inclusive

[00:02:19] researcher, Professor Veronica Swallow, who invited me to join her research

[00:02:23] programme as a patient partner.

[00:02:24] And little did I know that two years later, I would be working with her as my

[00:02:28] supervisor for my PhD, which I conducted as a patient researcher.

[00:02:32] And the first international congress I attended was ULARS in 2015.

[00:02:36] So ULARS is the European Association for Rheumatology.

[00:02:39] And Veronica encouraged me to submit an abstract based on the research

[00:02:42] that we've been doing, exploring mobile applications for young people

[00:02:45] with arthritis.

[00:02:46] I applied through a bursary and was successful.

[00:02:48] And I remember turning up at the Thierry de Roma in Italy in 2015

[00:02:52] and was really taken aback by the scale of this congress.

[00:02:55] I was excited, but I was incredibly overwhelmed.

[00:02:57] But I soon realised that within ULARS there was an incredible support

[00:03:01] network of patients, health professionals and wider people who welcome

[00:03:05] me with open arms into their community.

[00:03:07] And while speaking at industry conference a couple of years later

[00:03:10] in London, I was approached by Ann Clare Wadsworth and I was asked

[00:03:13] to join the Envision of the Patient Panel, which in turn led

[00:03:16] to an invitation to speak at the European Meeting of This Map in 2019

[00:03:20] and 2020.

[00:03:21] And this introduction into the world of Medicoms and publications

[00:03:24] inspired me to start my own career in Medicoms as an Associate Medical

[00:03:27] writer within the Gentharma Group in 2021.

[00:03:30] And I'm delighted to be able to progress to the role of senior medical

[00:03:32] writer today.

[00:03:33] Also, this year I've become a certified medical publication

[00:03:36] professional, joined Ismaaup's Patient Engagement Task Force

[00:03:39] and I was awarded the Ismaaup inaugural Rising SIR award as well.

[00:03:43] Wow, quite a lot of achievements in that very long list.

[00:03:47] It sounds like it's been a very exciting time for you.

[00:03:51] I actually remember you speaking at Ismaaup a few years back

[00:03:54] and honestly it was so inspiring for me and others in the audience

[00:03:58] to really see how patients could get involved in our industry

[00:04:03] and we're getting involved and to really hear about some of the

[00:04:07] work that you had been doing to date.

[00:04:10] So obviously today we're going to speak specifically around

[00:04:14] scientific conferences and you've obviously had some experience of this

[00:04:18] but what I'm interested in is just thinking about why patients

[00:04:22] like you would like to attend.

[00:04:24] So really giving our audience some insights into where the

[00:04:28] enthusiasm comes from to attend these conferences.

[00:04:32] Oh, let's be honest, the vast majority of Congresses were

[00:04:35] established floor and by doctors and all the time the

[00:04:37] audience expanded to allied health professionals including

[00:04:40] nurses, occupational therapists and so on and no patients.

[00:04:44] And there's lots of reasons why patients want to attend

[00:04:48] often there may be an opportunity to present research

[00:04:50] like was the case for me either the research that a patient

[00:04:53] organization has done themselves or indeed a collaborative

[00:04:56] project with different stakeholders.

[00:04:57] Well, the key drive is for me and for many other patients is our passion

[00:05:01] for amplifying the patient voice in research.

[00:05:03] Attendance at Congresses provides us with an opportunity to

[00:05:06] inform and educate healthcare professionals as well as

[00:05:09] network with health professionals, fellow patient advocates

[00:05:12] and the pharmaceutical industry.

[00:05:13] And I think that I can speak for lots of patient advocates who attend

[00:05:16] these Congresses to say that when you leave that Congress,

[00:05:19] you leave with hope, inspiration and that increased

[00:05:22] motivation to do more and to amplify the patient voice.

[00:05:25] Okay, that sounds great.

[00:05:27] And how do patients, patient experts like yourself

[00:05:31] hear about these conferences?

[00:05:33] How do you find out where the opportunities are?

[00:05:35] It usually starts with word of mouth.

[00:05:37] It's certainly how I discovered these huge meetings

[00:05:40] and it's been how I've been encouraging other people

[00:05:43] particularly the patient advocates to get involved.

[00:05:45] But there's also the relationships that patients have with patient organizations

[00:05:49] and the pharmaceutical industry and academic research centers.

[00:05:52] There's lots of collaboration happening

[00:05:54] and certainly seen that increase over the years.

[00:05:56] So these are different ways which patients find out about Congresses

[00:05:59] and maybe I're invited to attend or actually proactive

[00:06:03] and feel empowered to ask how can I get involved?

[00:06:06] And there's also increasing exposure on social media

[00:06:08] and online coverage and I think we particularly saw that during the

[00:06:10] COVID-19 pandemic when Congresses went virtual

[00:06:13] and then went to hybrid in the years that followed.

[00:06:16] So it's really, I was enabled more patients to hear about Congresses

[00:06:19] and to actually have a say in the conversation.

[00:06:22] Great. So when we think about patients being involved in conferences

[00:06:28] let's get a bit more specific.

[00:06:30] What are the sort of different opportunities that are available

[00:06:35] for patients who want to engage with these conferences?

[00:06:39] So individual patients can attend

[00:06:41] but I think it's better to say that the majority who attend are experienced

[00:06:45] patient advocates who may be independent in their own right

[00:06:49] are working with an advocacy organization

[00:06:51] and are there to represent the organization.

[00:06:53] And this difference is often reflected in the registration fees

[00:06:56] which Congresses advertise.

[00:06:58] Patients who are attending are generally involved in health care

[00:07:01] and involved in shaping health care another lot to offer

[00:07:04] and contrary to some of the myths which circulate,

[00:07:06] you know we haven't just dragged a patient off the street

[00:07:09] and sat them in the middle of the conference hall

[00:07:10] in the same way that we wouldn't do that with a third year medical student,

[00:07:13] you know they would be out of their depth and it's

[00:07:15] and you know the principle is no different to patients

[00:07:18] but that's not to say that less experienced patient advocates

[00:07:21] should be presenting them attendance.

[00:07:22] After all that is how we all learn.

[00:07:24] So for those newer to attending congresses

[00:07:26] we need to make sure that the support is in place

[00:07:28] so that they feel informed, educated and empowered

[00:07:30] to get them also to the experience.

[00:07:33] And speaking more broadly there's a real wide spectrum of roles

[00:07:36] for the patients at Congresses.

[00:07:37] Some people may be there simply to absorb information

[00:07:40] and to assess the current research landscape

[00:07:42] to feedback to their organizations.

[00:07:44] Some may be there to present abstract research,

[00:07:46] some may be invited speakers

[00:07:48] and then there may be some people there

[00:07:49] who are facilitating and moderating sessions

[00:07:52] and then all the way up to patients actually sitting at the table

[00:07:56] and providing strategic input into the congress agenda.

[00:07:58] Now I am a huge advocate of a combination of separate

[00:08:02] and collaborative sessions at congresses.

[00:08:04] I believe that it should always be an integrated track.

[00:08:06] We should never just have patients on the sideline.

[00:08:08] They need to be embedded within the other or congress.

[00:08:10] But having a track for patients but embedded within the congress

[00:08:14] with a mixture of individual sessions

[00:08:17] which provides that collaborative community for patients

[00:08:20] but also collaborative tracks with

[00:08:22] for example allied health professionals.

[00:08:24] Those opportunities offer wider exposure,

[00:08:26] more opportunities to learn

[00:08:27] and also generally have the bigger audience in the room.

[00:08:31] And there's an increasing number of international congresses

[00:08:33] to look to through inspiration.

[00:08:35] I'm naturally biased

[00:08:37] but the rheumatology community have been leading the way.

[00:08:40] Firstly with ULAB, the European Alliance of Associations to the Rheumatology

[00:08:43] as well as Pressed, the Pediatric Rheumatology Society in Europe

[00:08:47] and more recently the American College of Rheumatology ACR.

[00:08:51] And there are other ones outside of the rheumatology

[00:08:53] just not to show that I'm biased.

[00:08:55] So EAU, the European Association of Urology

[00:08:58] and ASCO, the American Society of Clinical Oncology

[00:09:00] are just an indication of some of those organisations

[00:09:03] which are expanding their reach.

[00:09:05] And there's also some national and regional conferences as well.

[00:09:09] In the UK we have had many involved conferences

[00:09:12] which sits under the umbrella of the National Institute for Health and Care Research

[00:09:16] where the whole focus of the conference is patient and public involvement and engagement.

[00:09:21] And I'm really, really excited to see that.

[00:09:22] We're also seeing online conferences such as the recent PXP,

[00:09:26] the Four Patients by Patience Congress,

[00:09:28] which is really flipping the narrative.

[00:09:30] We're actually having patients driving the agenda

[00:09:32] and HCPs are invited to attend.

[00:09:34] Wow, I mean it sounds like there's a lot of opportunity.

[00:09:37] You've presented some really nice examples

[00:09:40] of some conferences that are embracing this and doing it well.

[00:09:44] But my understanding is it's not always that easy and that straightforward.

[00:09:49] And there are actually some barriers that you come across

[00:09:53] to getting patients involved in conferences.

[00:09:56] So I'm wondering if you could just tell us a little bit

[00:09:58] about some of the barriers that you're aware of?

[00:10:02] I mean fundamentally we're trying to fit patients into a HCP model.

[00:10:06] First, we as patients have got to find a seat at the table,

[00:10:09] then we need to shout loud enough and then we actually need to be heard.

[00:10:12] And it doesn't always happen.

[00:10:13] And I've witnessed over the years how patients could be made to feel

[00:10:17] as though they are second-class citizens which is not acceptable.

[00:10:20] And while with a small minority,

[00:10:22] I've also witnessed how HCPs are often quite protective of their professional society.

[00:10:28] And while I understand the need to have that community,

[00:10:31] of HCPs just as we as patients have patient communities,

[00:10:35] in terms of international congresses,

[00:10:37] we cannot come at the cost of not involving patients

[00:10:40] because when you invest in patients it benefits everybody.

[00:10:44] And although I believe this is changing,

[00:10:46] it has been a case of who you know this is what you know.

[00:10:49] And that's why I'm an unrelenting advocate

[00:10:52] for getting more patients involved in congresses.

[00:10:54] The registration fees and expenses are another barrier.

[00:10:57] So congresses should be offering bursaries to patient advocates

[00:11:00] and a number of those examples I mentioned previously,

[00:11:02] including ULAR, are offering bursaries to the patients to attend.

[00:11:07] And we really should be ensuring that they are not out of pocket for attending.

[00:11:10] So while this may be a trivial point for HCPs

[00:11:13] with institutional budgets who deal with all of the logistics,

[00:11:17] it isn't the case of the patients broadly.

[00:11:19] Particularly patients who are independent,

[00:11:21] who may not have disposable income

[00:11:23] so we then book flights in accommodation and advance at the reimbursement.

[00:11:26] So these are just very simple barriers

[00:11:29] which can be overcome very easily.

[00:11:31] Term and capacity can also be another challenge

[00:11:34] in the same way as the HCPs with competing priorities and commitments.

[00:11:37] So being flexible is really, really important.

[00:11:40] As with most things, accessibility is another barrier

[00:11:42] and I always say this as three points of accessibility.

[00:11:46] Emotional, functional and technical.

[00:11:48] And this includes on-site provision

[00:11:49] but it also includes a virtual provision.

[00:11:51] So during COVID-19 congresses became virtual

[00:11:55] and then since 2020-21, the hybrid model has taken over

[00:12:00] as face-to-face meetings have been reintroduced.

[00:12:02] Now this hybrid model has made congresses much more accessible

[00:12:05] to wider group of people although we are starting to see that tail off.

[00:12:10] So I really do urge people who are listening

[00:12:12] to have those conversations with organisers of conferences

[00:12:16] to reconsider and look for hybrid opportunities to widen that reach.

[00:12:20] There's also regulatory restrictions as well.

[00:12:22] They can be a huge barrier.

[00:12:23] And it also thies into the them and us narrative.

[00:12:27] For example, patients are often unable to enter the exhibition areas

[00:12:30] where the pharmaceutical companies are.

[00:12:32] I feel like these arbitrary rules really don't reflect

[00:12:34] 21st century partnerships between the pharmaceutical industry and patients.

[00:12:38] Many of whom collaborate and consult with industry partners

[00:12:41] who are in attendance at congresses.

[00:12:43] And for those patients who don't collaborate with industry,

[00:12:46] they have the best food and coffee usually thrown in the exhibition areas

[00:12:48] and it certainly beats the dishwasher which is outside

[00:12:51] if there's any food ordering outside at all.

[00:12:52] So in India these little things can be real

[00:12:55] negrity bug-bearst for patients who attend and again just feeds that

[00:12:59] them and us narrative which we want to move away from.

[00:13:02] And finally where patients aren't involved in congresses.

[00:13:05] I believe it is in part due to few or no patients at all

[00:13:08] being embedded within the management of

[00:13:10] professional societies and organising committees.

[00:13:12] This can result in poor planning

[00:13:14] and it really is a failure to realise the patient voice

[00:13:16] which ultimately impacts the quality of the sessions that are delivered.

[00:13:20] Wow, so quite a lot of barriers there.

[00:13:22] Obviously some easier to overcome than others

[00:13:25] and I think you know it's worth our industry thinking about

[00:13:29] which of the barriers that we can help to overcome in the short term

[00:13:34] while also pushing for broader change in regulations etc

[00:13:38] to really help to bring patients in as equal stakeholders.

[00:13:43] So just thinking about the future and what good would look like

[00:13:47] can you just give me some sense of what you'd like to see happen in the future

[00:13:53] and how you think we can help to get there.

[00:13:55] Well I'm a visionary so I'm going to start with a long-term goal

[00:13:58] and I want to see open, transparent, honest communication

[00:14:01] between the regulators, congress organisers and professional societies

[00:14:05] with patients health professionals and the pharmaceutical industry

[00:14:08] all around the table to develop international guidance

[00:14:11] that works through everyone and is clear

[00:14:13] and that does not prevent the helpful exchange

[00:14:15] of the scientific information between all key stakeholders

[00:14:18] which includes patient partners.

[00:14:19] Now while that is a longer term goal there are so many short-term goals

[00:14:23] that can be realised.

[00:14:24] For example for people working in medical communications

[00:14:26] the possibilities are quite endless

[00:14:28] there could be abstract plain language summaries

[00:14:30] there could be podcasts summarising content at congresses

[00:14:33] videos which exposes the reach of content delivered at these meetings

[00:14:38] patient symposia, collaborative integrated tracks

[00:14:41] and guidance documents and tailored support for patients

[00:14:44] who are attending these congresses

[00:14:46] and then of course not forgetting the hybrid model

[00:14:48] including video presentations and virtual speakers.

[00:14:51] Again if we don't ask we don't get so I'm always really strongly

[00:14:55] suggesting to whether you're working in an agency

[00:14:57] whether you're a sponsor to have those conversations with organisers

[00:15:00] to see what is a possibility.

[00:15:01] I also had the call to action the sponsors and congress secretariat

[00:15:05] and that is to please engage in discussion

[00:15:07] review how you could do more to involve patients

[00:15:10] and a great way to demonstrate your commitment to involving patients

[00:15:14] is by doing the self-assessment to show that you meet the criteria

[00:15:17] for the patients included charter mark.

[00:15:19] Brilliant that all sounds like a fantastic future

[00:15:22] any final thoughts from you Simon before we wrap up?

[00:15:26] In short congresses throw I want to see patients included as experts

[00:15:31] at every level including integrated collaborative sessions

[00:15:35] and patient leaders embedded within the organisational structure

[00:15:38] of societies and organising committees.

[00:15:40] Sounds amazing I am thoroughly inspired by your vision for the future Simon

[00:15:47] and hope that I can work with you and many others

[00:15:50] to try to realise some of that vision.

[00:15:52] Unfortunately for today we've run out of time

[00:15:55] but thank you so much for your time

[00:15:57] and for sharing your experiences and your advice.

[00:16:00] Thank you for all the contributions you've personally made in this field

[00:16:03] it's been really incredible

[00:16:05] and thanks to everyone for listening to informed

[00:16:08] for medical communication professionals.

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[00:16:36] I'm Dawn Lobburn thanks for listening and goodbye.