The Patient Advocacy Series: Spotlight on Trishna Bharadia (Part 2)
Welcome back to The Patient Advocacy Series and the second part of my enlightening conversation with Trishna Bharadia, an influential voice in patient advocacy. In the first installment, Trishna shared her perspectives on the foundational aspects of effective patient engagement, the importance of involving patients in healthcare communications, and how organizations can create inclusive, patient-focused initiatives. You can read all about it here: [add link]
In this second segment, I delve deeper into the intricacies of patient involvement in scientific publications, the evolving role of professional societies in promoting patient advocacy, and the measurable impact of patient perspectives on healthcare outcomes.
We also discuss Trishna’s recent appointment to the steering committee for Good Publication Practice (GPP) and what this milestone means for the future of patient engagement in scientific communications. With her characteristic enthusiasm and expertise, she provides invaluable insights into how healthcare providers, publishers, and organizations can work collaboratively to foster a truly patient-centered healthcare ecosystem.
Join me as we continue this engaging dialogue, gaining a deeper understanding of the transformative power of patient advocacy.
Interview with Trishna (Part 2)
Do you have any suggestions or guidelines or examples where you’ve helped patient or participant experiences in clinical trials whether during their participation or in sharing results?
“Well, yes. So, there are various initiatives. For example, in Europe, there’s now a mandate for lay summaries of clinical trial results. This is a great way to share the results of clinical trials not just with the participants but also with the wider patient community. Additionally, plain language summaries (PLS) of publications are being shared with patient groups, enabling them to further circulate this information with their communities.
If we’re talking about the clinical trial experience for patients, it starts with involving patients in the clinical trial design from the beginning. When patients are part of the process, they can give valuable suggestions to share the results with community once the trial is over.
For example, hosting public events or partnering with patient groups where they can organize events specifically for their community. This can be a great way to present results of the studies. There are patient organizations that are holding webinars, for instance, I’m part of a national support group called Asian MS which works under the umbrella of the UK’s MS Society. We run webinars throughout the year, open for everybody, but particularly aimed at the South Asian community living with MS in the UK Some of our most popular webinars are ones which are to do with research.
We invite investigators present their research, whether it’s ongoing, completed, or in the early stages. It’s about ensuring there are variety of ways to reach the patient community and disseminate research results. This also links to the clinical trial experience. Having patients involved in the design of the clinical trials, any type of health research, or interventional drug treatment ensures that the study is more relevant, appropriate, and accessible. Their input can improve patient experience, recruitment, retention, and ultimately help make sure the study results reach people who need them the most.”
Because we’ve spoken about the role of or the involvement of patients in published information, including publications, manuscripts, and other materials, have you ever been able to measure the impact of doing so versus not doing so?
“There is research and publications out there, including various poster presentations at ISMPP conferences, that show the impact of having patients involved as co-authors on manuscripts or plain language summaries affects downloads and dissemination. Additionally, research shows that when patients are involved in scientific congresses, there’s much more social media dissemination around the content of those events. Anecdotally, from my experience in various authorship meetings, the questions raised by patient co-authors are often different from those raised by other authors.
So, I always request that any paper I co-author is open access and includes a plain language summary. I also seek permission to essentially disseminate it as widely as possible. Generally, organizations and publishers are open to that particularly if you’re the only author or it’s purely patients who are co-authoring. We have seen numerous patient co-authored publications where; another organization was involved. But, there are also cases where patient organizations or patient themselves conducted original research and published it themselves.
I think publishers are increasingly open to having those conversations around how we make sure that it is open access because we want to avoid inequality where only patient organizations that can afford submission fees are able to publish their work.”
Coming to professional associations, some of which you are part of, for example, ISMPP, the Faculty of Pharmaceutical Medicine, Patient Information Forum, Pharmaceutical Marketing Society, as well as MAPS. How do you see these collaborations or these professional societies advancing the role of patient advocacy and involvement in healthcare?
“I think these professional organizations hold an absolutely crucial role because they are in a position to drive the industry forward. They can set the bar and lead by example. For instance, ISMPP, now has a patient engagement taskforce focused specifically on ensuring that patient engagement becomes an embedded part of the work that medical publications professionals do. They are examining how ISMPP, as a professional society, can help its members to embed patient engagement in their work. At the same time, they are also reflecting on how ISMPP itself engages with patients. It’s truly a two-pronged approach.
All the associations I have worked with are exploring ways to support their members in better engaging with patients and embedding patient engagement in their work. At the same time, these organizations are reflecting on their practices- how are they engaging with patients? How are they involving them in meetings, conferences, and newsletters? How are they building relationships with advocacy organizations? How they set standards for patient engagement within their respective professions?
I’ve also recently joined the steering committee for Good Publication Practice (GPP), which I see as potentially a game changer. Because GPP 2022 brought outpatients very clearly as an important stakeholder within publications.
However, at that time, there wasn’t a patient advocate on the steering committee while there were lots of people advocating for patient engagement.”
That’s a brilliant piece of news! What an achievement for you and I think for all of us working for patient inclusion – congratulations! How did you react when you first heard the news?
“I was so excited. You should have seen me when I got the email- I was just like, “Oh my goodness!” During the initial meeting, I couldn’t stop expressing how honored I felt. The progress I’ve witnessed in the 15 years, as a patient advocate has been immense. Having that presence on the steering committee, sets a powerful example for other good practice steering committees. It’s important not just to talk about patient involvement and engagement but to actually involve patients in developing these good practices and guidelines. So yes, I was very happy. And I think this opportunity is fantastic.
So, there’s also the newly formed International Society for Patient Engagement Professionals (ISPEP), which is very recent- it was established this year. Having an organization specifically for patient engagement professionals will also help feed into all these other organizations like ISMPP, MAPS, the PM Society and others. Because it will help to raise the presence and the awareness of patient engagement in all these different areas of the pharmaceutical and healthcare industry.”
Since we are on this topic, can you tell our readers a little more about the impact of GPP?
“Yes, absolutely. GPP is key. When GPP 2022 came out, I worked on a piece with Angela Sykes and Catherine Skobe for the DIA Global Forum, to explore what this new iteration of GPP means, particularly for patients. GPP holds an absolute critical role, especially within the highly regulated and risk-averse pharmaceuticals industry. Companies often want something in writing to confirm that certain practices are permissible- a clear framework saying, “You are allowed to do this.” This mindset extends beyond publications to patient engagement in general.
Discussions with compliance and legal colleagues often revolves around does the code of practice allow us to do it such as EFPIA or ABPI codes. Because of industry’s historically risk-averse nature, particularly when it comes to patients, there’s always this fear, are we being promotional? Can we do this with patients? Are we allowed to work in this way? This is why having codes of practice or good practice guidance like GPP is so valuable. These documents make recommendations and clarify how to work within the rules. Having patients as a named stakeholder in codes of practice and guidance offers not just clarity for the industry but also confidence for patients and patients’ groups to say, Actually, we can do this with you-GPP says so.
I’ve been in situations where this has been particularly around compensation. For example, pharma companies have told me, “Oh, we’re not allowed to compensate for publication activities.” And I’ve shown them a copy of GPP and highlighted the relevant section that says, Actually, yes, you can. And GPP says you can.
So, I think it gives patients and patient groups the confidence to challenge some of these issues one of the challenges I often encounter in the industry is confusion about what constitutes regulation, what are codes of practice, and what is actually internal company policy. Frequently, I hear people saying, “Oh, no, we can’t do that because the code says we can’t,” when in reality it’s not the code- it’s the company’s internal policy. Having written guidelines in black and white, “Actually GPP says this” If a company is not compensating patients, it’s got nothing to do with GPP, it’s company’s internal policy which can be changed.
This is why GPP is absolutely critical. I’m looking forward to the next iteration. I’m hopeful about having the opportunity to contribute to its development.”
Yes. Now that you’re a part of the committee, I’m looking forward to all the changes that will happen from a patient’s point of view, for sure.
“Absolutely. I also want the readers to be aware of the sheer variety of different topics where patient involvement can play a key role, including patient experience, patient-reported outcomes, experiences of caregivers, and more. It’s crucial for people to recognize different types of publications and manuscripts that patients can contribute to beyond just patient or physician perspective opinion articles, which are often the first type that come to mind.”
Thank you so much for this, and for taking the time out from your busy schedule. I am sure our readers will find the discussion interesting and will take away valuable insights on the role of patients in healthcare communications.
And that wraps up our chat! I hope you enjoyed this conversation as much as I did. Trishna has also kindly provided a list of resources and publications for everyone to refer to – hope you all find it useful.
Resources:
Living with multiple sclerosis: the South Asian experience British Journal of Neuroscience Nursing
Patient authorship of medical research publications: An evolution, revolution, and solution? Learned Publishing
Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study Research Involvement and Engagement
Unmet Needs in the Healthcare Experience of Women of Childbearing Age with Chronic Disease and Recommendations for Change Journal of Womens Health, Issues and Care
Partner with patients or perish? Medical Writing (Supplement)
Understanding the Symptoms and Impacts Experienced by People with Relapsing-Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews
Neurology and Therapy
Summary of Research: Caregiver Involvement in MS: Duty or Disruption? Neurology and Therapy
Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study. International Journal of Geriatric Psychiatry
Patient-reported outcome measures in MS: Do development processes and patient involvement support valid quantification of clinically important variables?
Multiple Sclerosis Journal – Experimental, Translational and Clinical
Management of bladder dysfunction in people with multiple sclerosis British Journal of Nursing
Author:
Dr. Anupama Kapadia
General Manager, Enago Life Sciences
Connect with Anupama on LinkedIn