The Patient Advocacy Series: Spotlight on Trishna Bharadia (Part 1)
Welcome to The Patient Advocacy Series, where we at Enago Life Sciences explore the pivotal role of patient advocates in shaping healthcare communication, engagement, and policies. In its first edition, I am honored to talk to Trishna Bharadia, an acclaimed patient advocate whose work has profoundly impacted patient engagement and education, particularly in the realm of chronic health conditions such as multiple sclerosis.
Trishna brings a wealth of experience in fostering effective communication between patients, caregivers, and healthcare professionals. Her insights are deeply rooted in real-world advocacy and are informed by her personal journey and professional collaborations. From championing inclusive health communication to leading efforts in patient-centric clinical trial designs, Trishna is a beacon for meaningful patient involvement in healthcare.
In this engaging conversation, Trishna shares her approach to tackling complex health communication challenges, best practices in patient engagement, and how organizations can truly embed patient perspectives into every stage of healthcare delivery. She also sheds light on her exciting role as part of the steering committee for Good Publication Practice (GPP) and the evolving landscape of patient advocacy in professional organizations.
Join me as I delve into Trishna’s invaluable experiences and actionable advice for creating a healthcare ecosystem that prioritizes patient voices at its core.
Interview with Trishna (Part 1)
Q1. Knowing you are an established patient advocate and working hard for patient engagement and communication, how do you personally approach effective communication with patients regarding complex health issues like, multiple sclerosis?
“I think the most important thing any health communicator can do is talk to patients and caregivers – that always needs to be the starting point. The worst thing a health communicator can do is make assumptions and begin their work based on those assumptions.
From the beginning, we need to talk to patients and caregivers, asking:
- What information do they want?
- In what format do they want it?
- How much detail do they want?
- What level and pitch of the language suits them?
Because there are some patient communities that generally tend to have more expertise than others.
For instance, traditionally the HIV community has been very active. That’s when patient advocacy was born.
So, we must avoid assumptions at all costs. This applies to any organization creating materials for patients and caregivers. The starting point should always be understanding what patients want and need, rather than creating resources that may not even be relevant to them.”
Q2. Can you share some examples of successful patient engagement strategies that you have implemented or seen implemented?
“Yes. Anywhere where patients are being involved from the beginning or within the process. For instance, patient involvement in publications, planning and reviewing of any kind of materials. Many organizations now set up patient councils that are standing advisory committees that review plain language summaries, patient study information sheets, and disease awareness information. They also confirm that writers are being trained in plain language, so they understand what is appropriate for communicating with a non-scientific audience.
For example, Pfizer created a patient collaborative board focused on patient involvement in Pfizer sponsored publications. There are organizations that have standing groups. For instance, publishers like Taylor & Francis, Becaris, and Sage have groups of patients who review plain language summary submissions. So, yes, things are moving forward in the right direction.”
Q3. In your experience, what are the key challenges that patients themselves face when trying to understand their health conditions? Could you also share some ideas on how this could be addressed, from a patient point of view?
“Yes. I think some of the key challenges include knowing where to go for trusted information. For that, we need greater education on how to filter information so patients know what they can trust especially given the overwhelming amount of content online. To address this, we need to develop quality criteria. In the UK, there is an organization called the Patient Information Forum, a membership body for health information professionals. They have developed the PIF TICK, a quality stamp for which the organizations must follow certain processes and meet certain criteria.
But when you gain approval for the PIF TICK, all the health information you produce carries this quality stamp on it, showing that the organization is a trusted health information creator. I think this can be very helpful in building trust, ensuring patients feel confident in the information they are receiving. A similar initiative is happening on social media platforms such as YouTube Health where trusted health content creators must meet certain criteria in order to be part of YouTube Health.
This approach can help patients identify reliable sources. Building trust and guiding patients towards high-quality content is crucial. Another issue is the challenge of understanding the available information. Health literacy and general literacy levels vary widely, which can make it difficult to create health information that caters to different needs. As a result, people will not necessarily find a piece of information that is pitched for them. To address this, having multiple options is great.
For instance, consider a manuscript. Some patients will be able to read it if it’s open access and it’s available. They will be able to have sufficient understanding to be able to incorporate it into their informed decision-making. However, for many patients, that won’t be the case. That’s where having options becomes essential. For instance, have a plain language summary, maybe accompanied by a podcast or an audio summary. Lately organizations are creating videos and animations to compliment manuscripts.
That’s how one piece of information can be transformed into multiple formats tailored to different level of understanding, information processing, and health literacy.
These are a couple of the key challenges, especially about what I refer to as “the democratization of information”. We need to make sure the patients understand where they can go to for information that is suitable for them and their particular needs.”
Q4. How does one determine the patient’s level of understanding so that they can contribute meaningfully to a publication?
“See, you need to create an environment where the patients feel comfortable. They should feel comfortable asking questions, as this will help you to determine whether or not they are understanding the process and will make a meaningful contribution. Let’s take a manuscript, for instance, say you’ve asked patients to co-author a manuscript. During an authorship meeting you have two patients are inputting a lot while others aren’t really saying much.
Then, you have to consider, “Okay, is it because of their personality, and they’re generally quieter? Do they need a different method to provide their input? Do they not understand? Are they uncomfortable?” It could be that they lack the confidence to share their input in front of doctors, professors, or researchers. There are different factors. But the most important thing is to ask the patient directly and, as I mentioned, create an environment where they feel comfortable sharing.
I consider myself an experienced patient advocate when it comes to publications and health information. But it took me a while to build the confidence that my opinions and insights are as valuable as anyone else’s – any other stakeholder. And to trust that what I said isn’t going to come across as silly. It took time to develop that confidence. Today, we have many tools and resources available and a better understanding that patient insights and perspectives are valuable. We should be creating this environment where people feel confident that their opinions and perspectives will be valued and heard.
There are also training resources available that can help to educate patients on the creation of health information and their involvement in publications. For example, there’s the patient authorship online training from WECAN and Envision Pharma, which is free, online, and self-paced. Even though I’m experienced, I’ve done it because I thought there might be gaps in my own knowledge. I found it interesting and valuable. I highly recommend that the organizations involving patients in publications direct patients to this training.
Additionally, there are great resources from Patient Focused Medicines Development (PFMD), a multi-stakeholder collaborative, covering topics like producing plain language summaries and general patient engagement. These resources are good for both patients and organizations that are involving patients to understand how to meaningfully engage with patients. Many resources produced by PFMD are applicable to any sort of patient engagement.”
Q4. How do one ensure that the content created is accessible and relevant to diverse patient populations?
“There are several factors. Firstly, you need to ensure diversity in the patient voices that you’re involving. For example, it might be that not everybody from all subgroups within the patient community is engaged, but you should find somebody from each subgroup who is engaged. This person can then feed back into the community, get others involved in your patient engagement activities and help you understand how to make things more accessible and relevant to those populations. I believe there is an underutilization of patient advocates, therefore, grassroots patient advocacy groups and patient advocates are working with underserved patient populations. Often these organizations or patient leaders, while doing fantastic work, may fly under the radar because they’re not necessarily huge organizations with significant resources or a strong online presence. As a result, they might not appear easily in a simple Google search.
Therefore, it’s important that organizations understand that diversity, equity, and inclusion require efforts, deep understanding, and long-term relationship building. It’s not enough to just find a group, work with them when needed and then leave it at that. These should be ongoing to truly ensure accessibility and relevance.
Additionally, there are tools and guidance available for accessibility such as guidance around translation of materials. Therefore, I mentioned the Patient Information Forum which has got lots of resources on their website including how-to guides on producing accessible information and high- quality translated information. It’s a combination of utilizing these resources, guidance, and tools with direct engagement from patient populations to build links with more diverse and underserved subgroups within any particular community.”
To our readers: I am sure you enjoyed reading this conversation and I hope you found a lot of the information mentioned helpful.
Watch this space for Part 2 of the interview where we talk more about the crucial role of patient involvement in clinical trials, publications, and healthcare professionals to drive more inclusive, patient-centered healthcare practices and outcomes. Coming soon!
Author:
Dr. Anupama Kapadia
General Manager, Enago Life Sciences
Connect with Anupama on LinkedIn