With healthcare and clinical research never more in the public eye, the importance of effectively communicating medical research with patients and the wider public is clear. The value of plain language summaries (PLS) and open access publishing in broadening access to research is increasingly recognised, with patient involvement in clinical trial design and publications receiving growing attention. Trishna Bharadia is a Patient Engagement Champion and Health Advocate who collaborates with pharmaceutical companies and a number of health- and disability-related organisations. Following her presentations at the 2021 European Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan found out more about her experiences with patient partnerships and her perspectives on the impact of COVID-19.
First of all, could you tell our readers a little about your background and how you became involved with patient engagement?
“I became involved with patient engagement through the advocacy route. I live with several long-term conditions – I was diagnosed with multiple sclerosis (MS) in 2008 – and that’s what really led me into the world of patient advocacy. I was aged 28 at the time of my diagnosis and it wasn’t a great experience, so I really wanted to change the experiences of others coming through the system.
From there, I started to work across disease areas and with multiple stakeholders. I began to realise that a lot of the issues I was coming across weren’t specific to MS and the MS patient journey, but were systemic issues that needed to be addressed. I work both nationally and internationally to really get the patient voice heard louder, stronger and more effectively throughout the healthcare ecosystem and the medicines development lifecycle.
I work both nationally and internationally to really get the patient voice heard louder, stronger and more effectively throughout the healthcare ecosystem and the medicines development lifecycle.
Areas that I have become interested and experienced in include good patient engagement practices, diversity in healthcare, the impact of digital innovations, and improving access to health information. In a nutshell, my work spans consultancy, writing, co-creation, media outreach, and more. I’m currently a Patient Engagement Editor for the Drug Information Association’s Global Forum magazine and I’m on the Patient Advisory/PLS Panels for the Future Science Group and Therapeutic Advances in Drug Safety. I also work directly with agencies and pharma companies on activities including PLS information and content review.”
What does patient engagement entail? What kind of pharmaceutical industry-related activities would you like to see patients be more involved in?
“I actually think the term ‘patient engagement’ sounds very transactional and one-way, and I prefer ‘patient collaboration’ or ‘patient partnership’. It’s about recognising patients as key stakeholders within the healthcare ecosystem and giving them an equal seat at the table, not as an observer, but as an active participant in moving the life sciences and healthcare industry towards a more patient focused future.
It’s about recognising patients as key stakeholders within the healthcare ecosystem and giving them an equal seat at the table, not as an observer, but as an active participant.
Linked to that, there are 3 things that I would really like to see more of in the future. Firstly, patient collaboration should be happening much earlier on in the research and development (R&D) continuum. This should go all the way back to when research priorities are being set and clinical trials designed. Patient involvement should then flow consistently throughout the development process, rather than just popping up at certain points. There are so many areas in which patients can be and should be involved, yet I usually see companies focusing on a few areas and believing that they’ve got patient involvement right. That’s not the case.
Secondly, we need to make patient partnership opportunities more accessible to a diverse group so that we’re hearing more voices – not just the same ones from the same type of people.
We need to make patient partnership opportunities more accessible to a diverse group so that we’re hearing more voices – not just the same ones from the same type of people.
Thirdly, we must look deeper into the way patient involvement is shaped, and get patients involved in this process. For example, I’ve co-developed projects including surveys, patient journey mapping and focus groups. Focus groups are important to gain patient insights, but you also need to consider whether aspects like the logistics and discussion guide are patient focused too. I’ve helped to develop content and facilitate focus groups, as well as provide input into post-meeting reports – these are skills shared by many patient advocates. Another example, particularly in the UK and Europe, is unbranded disease awareness campaigns. There’s an assumption that if you tell patient stories as part of the campaign, that ticks the ‘patient centric/patient focused’ box. I was recently involved as an Executive Producer on two campaigns, contributing to the concept, recruitment, campaign development and dissemination. Here, we went beyond asking a couple of patients with MS to tell their stories: from end-to-end, a high-level advocate was involved to make sure the language was right, the messaging was going to hit the mark with the community and that there was diverse representation. These two examples illustrate how industry can get a patient advocate involved as part of a project team, so that there is true co-creation and collaboration. It’s important to remember that there are many professional advocates out there who are developing experience and can provide a business service in niche areas such as patient engagement strategies.
We must look deeper into the way patient involvement is shaped, and get patients involved in this process.
I hope this gives an idea of some of the ways in which pharma could get patients more involved.”
At the ISMPP EU meeting, you described how COVID-19-related concerns have led a significant proportion of patients to delay medical care, partly due to the proliferation of fake news. You have also discussed how COVID-19 vaccine development has highlighted a lack of understanding of clinical trials and regulatory approval processes. How can pharma and medical publications professionals communicate with patients effectively, to help combat misinformation and support patients to make informed decisions about their care?
“Addressing this issue really requires a two-pronged approach. Firstly, more information needs to be put out there that is understandable, in plain language and in the appropriate format, and this needs to be considered trusted information. The UK-based Patient Information Forum (PIF) offers the PIF TICK scheme, which enables patients to see whether the information they’re reading is reliable and trustworthy at a glance. So much information is readily available on the internet, and some of the misinformation and fake information can look very reliable and genuine. Having a way to establish whether information can be trusted is really important.
More information needs to be put out there that is understandable, in plain language and in the appropriate format, and this needs to be considered trusted information.
Information has to be disseminated through the channels where patients and caregivers are looking for it, not the channels where pharmaceutical companies want patients to be looking. Does the average person go to a pharma company website to look up information about a particular medicine or disease? It’s unlikely. Is the average person’s first port of call for health information a medical journal? Again, this is unlikely. I think that it is particularly important to target the channels through which communities are already getting their health information when you’re trying to reach diverse groups. For example, a series of videos related to COVID-19 produced by the BBC Asian Network in the UK were posted on their social media in a range of Asian languages. These feature trusted people, such as doctors, nurses and Professors. Asian television channels have also been showing adverts about COVID-19 measures and vaccines. People are already getting their information from these types of channels, so these are the places you should be targeting, rather than trying to make people go to where you want them to go.
Information has to be disseminated through the channels where patients and caregivers are looking for it, not the channels where pharmaceutical companies want patients to be looking.
Underpinning all of this should be patient partnerships and collaboration in producing the health information. If patients are involved, they will be able to help, advise and support industry professionals to get the information to the right people, at the right time and in the right format. At the end of the day, if you’re an industry professional, you have expertise in a particular area, but this doesn’t necessarily mean that you know where certain communities are getting their information from, unless you’re embedded in that particular community.”
The COVID-19 pandemic has seen increased submissions to scientific journals, but also a dramatic increase in the use of preprints for rapid sharing of COVID-19-related data. Some preprints have attracted significant news and social media attention, even though the findings haven’t been peer reviewed. How do you think preprints have impacted communication with the public during the pandemic? Do you have any recommendations for how the tentative nature of the findings could be communicated more clearly?
“I do think preprints have impacted communication with the public during the pandemic. The average member of the public doesn’t have a clue what a preprint is – if they read something, they take it at face value and believe that it must be true. It’s important to be transparent – to make the tentative nature of the findings very obvious and clear from the very beginning. There is a real need for writers and editors to make sure that the intended audience will be able to correctly contextualise information – this is something I often say when I see sensationalist headlines about ‘miracle cures’ that are actually based on mouse models or early work in the R&D continuum. A typical reader won’t necessarily know where that piece of information fits along the product development life cycle, so you need to note that the information being shared is from a preprint and explain what that means.
There should be an onus on making sure that health journalists have access to easy-to-understand health information and that they are better informed about conveying this in a more understandable way.
I do think that there should be an onus on making sure that health journalists have access to easy-to-understand health information and that they are better informed about conveying this in a more understandable way, as many people do get their information from the mass media. We often talk about the primary audiences for PLS being patients and caregivers, but general practitioners (GPs), nurses and health journalists are also potential target audiences. Sometimes this can be forgotten, but this is something that is needed.”
You have mentioned that you prefer the term ‘patient partnerships’ to ‘patient centricity’ as multiple stakeholders must collaborate while ensuring patient needs are the focus. What benefits do patient partnerships have for pharma, and how can opportunities be created that are valuable to the patient too?
“Working with patients makes pharma’s work more relevant to the end customer, which in turn is going to impact uptake, adherence, and outcomes for everyone. Patient partnerships are really about making the products, services and information work for the patient – this approach is normal in other industries. I think the lack of patient collaboration in pharma has arisen because, traditionally, there’s been a culture of seeing the healthcare professional as the end customer. Particularly in Europe and the UK, treatment choices come down to the prescribing, and it’s been forgotten that the end customer is the patient. Ultimately, especially in areas where there are a lot of treatment options, it comes down to what is more relevant or convenient for the patient. Companies do need to make sure that they’re involving patients in the development of these products, services, or information so that they’re taken up.
Working with patients makes pharma’s work more relevant to the end customer, which in turn is going to impact uptake, adherence, and outcomes for everyone.
In terms of creating opportunities that are valuable for patients too, I think we need to be looking at what patient communities need: ask them how they want to collaborate and what they want to get out of the collaboration. As I mentioned earlier, it shouldn’t be a one-way transaction.
Some of the things that I’ve found valuable about my partnerships with industry have been learning more about my disease and the latest research, widening my support network, and learning more about how the industry works and the drug development life cycle. Ultimately, this leads to me being better informed when it comes to making decisions about my own health conditions. The pandemic situation has really brought home just how much I have learned over the 10 years I’ve been a patient advocate. Clinical trials and vaccine development were suddenly all over the mass media, and I realised that I have absorbed so much through my work, putting me in quite a privileged position of being able to understand these concepts. I also feel like I’m helping the patient community, and at the end of the day, that’s what really matters for me. It’s about improving the way that patients are seen, valued and how they can engage in the healthcare ecosystem and drug development lifecycle.
I think it’s really important for companies to do regular, honest, 360-degree evaluations of their patient involvement, in order to learn how to create and develop more valuable opportunities for patients.
I think it’s really important for companies to do regular, honest, 360-degree evaluations of their patient involvement, in order to learn how to create and develop more valuable opportunities for patients. I don’t think that it should be a case of involving patients in a project and assuming that you’ve got it right.”
One area in which patients are increasingly involved is the development of PLS. Taking this further, UCB Pharma has set up a patient publication steering committee, in which you played a role. During the product development timeline, when and how should pharma set up patient partnerships? What are the benefits of involving patients in publication planning?
“I can’t emphasise enough that patients should be involved as early as possible in the R&D continuum: for a drug, right from the setting of research priorities. Patients should also be involved in individual projects as early as possible. I was so pleased to be involved in the patient publication steering committee pilot because it’s not about getting a patient to review a publication that’s already been decided upon and written – essentially that’s just looking for a patient to rubberstamp it. A patient publication steering committee means that patients are involved in determining publications in the first place.
It’s not about getting a patient to review a publication that’s already been decided upon and written—essentially that’s just looking for a patient to rubberstamp it.
Setting up steering committees is a great way to gain patient involvement from end-to-end. Increasingly, I am seeing companies and organisations setting up steering committees or advisory councils in order to get patient involvement in the strategic alignment of projects. Having a patient steering committee also makes it much harder to forget that you need to consider patients at every step!”
You have described how patients vary widely in experience, skills, knowledge and expertise. Since a ‘one size fits all’ approach to patient engagement is not appropriate, do you have any advice about identifying the right patients for each project?
“Think about it like a job advert: you need to determine the skills, knowledge and competencies that are required, and then look for the right people to fulfil those roles, while ensuring that there always is diversity of voice. Patient Focused Medicines Development have some great ‘how to’ guides which can really help organisations to frame their patient partnerships.
How you look for patients will depend on who you need. It might be a case of searching on social media or LinkedIn, or approaching people through a patient focused organisation like the European Patients’ Academy on Therapeutic Innovation (EUPATI). Looking at publications and conference or congress speakers and attendees can also help to identify some of the higher-level patient advocates. You can also ask patient advocates themselves: many have wide and far-reaching networks, and can often help to identify people in the right disease area with appropriate skills for a given project. If you have colleagues who are already engaged in patient partnership activities, you can also ask them who they are working with.
Identifying patients to approach is something that can be made more complicated than it needs be. Don’t be afraid of approaching people on social media.
Identifying patients to approach is something that can be made more complicated than it needs be. Don’t be afraid of approaching people on social media. I’m often contacted on LinkedIn or Instagram about projects, and these approaches actually make advocates really happy because if people are finding us, it means that we’re doing the right things in terms of raising the patient voice.”
Finally, the pandemic has heralded increases in telemedicine, remote participation in clinical trials and other virtual opportunities for patient engagement. From your perspective, have these changes benefitted patients, healthcare providers and pharma, or helped to address the important issue of improving diversity in clinical trials? Would you like to see these opportunities continue in the future?
“The changes have benefitted patients to some extent – but not all patients. Increased use of virtual healthcare tools can be more convenient, less burdensome and improve access to clinical trials and patient engagement opportunities, especially for those who might have found it difficult to participate in the past. However, we have to be aware of the digital gap. In the UK, this has been highlighted during the pandemic, where we started to see a disparity in the ability of families to home school depending on their access to printers and tablet devices.
We need to make sure that we don’t reach a scenario…where some patients have better outcomes because they can access digital tools and telemedicine and are technologically savvy.
We need to make sure that we don’t reach a scenario of the haves and the have nots, where some patients have better outcomes because they can access digital tools and telemedicine and are technologically savvy. We also need to remember that telemedicine and decentralised trials place more responsibility on the patient, so patients need to be sufficiently comfortable, confident and informed in order to take on activities that might have been conducted by site staff in a traditional trial.
I would like to see these digital and virtual opportunities continue in the future, but choice is key. We shouldn’t see digital as a Holy Grail – we should see it as an opportunity to provide more choice to patients, pharma and healthcare providers to actively participate in the healthcare and medicines development ecosystem. I think we’re a long way from going to a fully digitalised, remote, decentralised scenario because this is not going to suit or be suitable for every single person.
Looking to the future, I would also like to mention something I’m really passionate about: patients being able to be authors of peer reviewed articles. A recent survey of medical journal Editors-in-Chief found that 69.2% thought that it was acceptable for patient partners to be authors of biomedical research articles, but 30.8% said that it wasn’t appropriate. Only 3.6% of the Editors-in-Chief stated that their journals had a policy on authorship for patient partners. These findings illustrate that we still have a long way to go before we have a true partnership in terms of involving patients within scientific publications.”
We still have a long way to go before we have a true partnership in terms of involving patients within scientific publications.
Trishna Bharadia is a Patient Engagement Champion and Health Advocate. She is owner of The Spark Global, an ambassador for the MS Society UK, ADD International and Lyfebulb, member of MS in the 21st Century and the WEGO Health Patient Leader Advisory Board, and a patron of Cambs Therapy Centre, ParaDance UK and the Chilterns MS Centre. You can contact her on LinkedIn or follow her on Twitter @TrishnaBharadia.