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Patient Engagement with Shazia Ahmad
Understanding the patient journey is an important part of clinical trial development. Hi, I’m Tom Rhoads, CEO of Spencer Health Solutions. On today’s podcast, we welcome Shazia Ahmad, Senior Director of Patient and Physician Services at UBC. She is a thought leader in the space of patient communities and supporting the patient throughout the clinical trial process. I hope you enjoy this conversation on People Always, Patient Sometimes.
Janet Kennedy: (00:31)
Hi I’m Janet Kennedy and I am your host for People Always, Patient Sometimes, a production of Spencer Health Solutions. I am really looking forward to a conversation today with thought-leader Shazia Ahmad. She is the Senior Director of Patient and Physician Services at UBC. Welcome to People Always, Patient Sometimes, Shazia!
Shazia Ahmad: (00:52)
Thank you Janet! Thanks so much for having me today.
Janet Kennedy: (00:54)
I’ve been trying to track you down for a conversation for actually a number of years, and I’m so glad I finally captured you today.
Shazia Ahmad: (01:03)
Yes, absolutely! So excited to be on.
Janet Kennedy: (01:06)
Well, I want to be talking to you a lot about the work that you do specifically as a director of patient and physician services; but first I think we need to set the stage. Can you tell me a little bit about UBC?
Shazia Ahmad: (01:18)
UBC was founded in 2003 by industry experts with a passion for innovation and a commitment to working with pharmaceutical and biotech organizations in proving the safety, efficacy, and value of pharmaceutical medicine products. UBC is a leading provider of pharmaceutical support services, and we partner with life science companies to make medicine and medical products safer and more accessible.
Janet Kennedy: (01:46)
Now, would you consider U B C to be a C R O?
Shazia Ahmad: (01:51)
I would say we’re CRO, but we really are proud to kind of stand out as a service provider, I would say.
Janet Kennedy: (01:59)
Okay. Well tell me a little bit about what that means to be directing patient and physician services.
Shazia Ahmad: (02:05)
At UBC, I have the honor of leading a team called patient and physician services. And what that is, is we’re involved in supporting biotech and pharmaceutical sponsors in different services around patient recruitment, engagement, compliance, retention. We offer different services around making sure that we engage patients early on in research to ensure that the sponsor captures everything they need to, to really understand the patient journey and the development of whether it’s the protocol design, developing the right strategies for recruitment retention. We’re also able to integrate capabilities and services around awareness campaigns, where we use social media, digital outreach, and traditional advertising. A lot of programs that we do work on now at UBC involve the rare disease space. And I think Janet, that’s where you and I really connected most over the last few years; a lot of the rare disease work that I lead. So we’re able to also integrate different capabilities to really work with patient advocacy groups and really involve them early on in the launch of our programs to ensure that we’re not just getting the patient voice by making sure that we work with the patient advocacy group as a partner, and really we work as a bridge to the sponsor with the patient advocacy group to ensure that we have the right strategies in place to support recruitment and retention for our program.
Janet Kennedy: (03:41)
So are you actually bringing in these advocacy groups so early that they’re participating in evaluating or contributing to the protocol design?
Shazia Ahmad: (03:49)
Exactly. Exactly.
Janet Kennedy: (03:51)
Well, that’s kind of exciting. I’m curious – what sort of feedback have you seen coming from these groups that actually made the sponsors rethink how they had written a protocol?
Shazia Ahmad: (04:03)
It’s been interesting because there’s been cases where we’re able to learn something. And this could be in a rare disease indication where something was not thought about before, on what mattered to the patient, even the caregiver or care partner around different end points that were not considered. For example, they’ve not thought about maybe walking up the stairs would be something important to think about in the protocol design or certain visits to come to the study site and learning those things early on have really helped us integrate solutions to really make it easy for the patient caregiver care partner to participate in the study. And also we’re able to integrate the solutions that really make sense for that protocol. For example, we have a clinical trial nursing service offering that we provide to different sponsors, where it makes sense to integrate home nursing for a clinical trial. The other thing that we’re starting to do now based on our learnings, working with advocacy groups is integrate more decentralized solutions for clinical trials, which really has been going on a lot pre pandemic. But I think the pandemic has now really invigorated that even more and making sure that we can really bring in innovative solutions.
Janet Kennedy: (05:25)
Certainly if you’re dealing with a rare disease community that probably has multiple comorbidities – maybe a suppressed immune system – they’re definitely gonna want to stay at home. So I’m very curious about the decentralized part. Are you finding that what you ended up developing was just more opportunities to gather data from the home, or were you working around fewer visits to a clinical office, but you tried to get more done at the time you were there? How that actually impact the work that you did in 2020?
Shazia Ahmad: (06:00)
Actually it’s a combination of all those things where we’ve been able to do more home visits and be able to really capture real world evidence and really real end points that couldn’t be captured before; even things in between visits. So that’s been very valuable, especially with the home nursing. And then also with the decentralized trials. One avenue we’re actually looking to go to now is we’ve often had challenges in getting referrals from referring providers to really open up the pool of participants in areas where they want to participate, but are unable to, because they’re not near a study active study site. So that’s another way that we’re able to connect participants patients to trials in their communities and really going to where patients are at.
Janet Kennedy: (06:53)
Well, that’s interesting. So in other words, in the past, we tended to have our principal investigators in larger metropolitan areas near maybe hospital systems with robust research, but the patients aren’t necessarily there. They could be out in the boondocks somewhere. And what you’re saying is now with this emphasis on decentralized solutions, you’ve been able to incorporate more patients – maybe even a broader range of patients from a diversity perspective – because these solutions made that possible.
Shazia Ahmad: (07:26)
Exactly, Exactly.
Janet Kennedy: (07:29)
So when you talk a little bit about real-world evidence and real-world outcomes, what kind of information are you gathering?
Shazia Ahmad: (07:35)
We’re looking at, and this could be any therapeutic area, but specifically in the rare disease space, we look at different – and this is more a question, I think, clinical operations, we work with the clin-ops team and developing the outcomes that matter – but what we do is we work with the patient advocacy groups to really hone in on a protocol and make sure the questions that are being asked, whether it’s the patient reported outcomes, those things are really elements that matter to the patient. And it could be just the normal six minute walk tests. That’s part of usually a pulmonary hypertension study or whether a cystic fibrosis patient had to take a day off from school. So it could be any of those things.
Janet Kennedy: (08:17)
Shazia, what kind of key trends are you seeing in the industry regarding patient engagement in clinical trials and in healthcare work?
Shazia Ahmad: (08:27)
That’s a really good question, and something I’m really excited about. We’re starting to see the need and the importance of integrating virtual patient communities. Something I’m really proud of that we’ve been able to actually start at UBC many years ago with a partner sponsor where we’ve developed patient communities, where patients can be part of a clinical trial and be engaged in part of a community. And they really, they feel then that they’re really being, not just a contributor to the research, but then it’s like a community building where they can be brought back or given information, not just about the research they participated in, but they can be informed on other trials that go on and they may be interested to participate in, in the future. So that’s something I’m really excited about. I think there’s more and more sponsors wanting to do that. And the other thing is the importance of giving back to the participants and making sure that they know what they contributed to participants often many, many years ago, did not receive information about the clinical trial they participated in, but now more and more sponsors are seeing the importance of needing to do that by giving back to participants, by providing lay summaries and a lay summary is really just summarizes the clinical trials, the results in a very patient friendly format.
Janet Kennedy: (09:58)
Recently, there were two different Huntington’s disease studies that did not come to fruition and announced in the same week, which was, I think very, very disappointing for the HD community. And that I think proves the point that not all research is going to work. But you have to acknowledge the contribution that patients have given and support them, even when things don’t work out; help them understand why and explain what was it about the research that didn’t allow it to move forward.
(10:29)
Exactly.
Janet Kennedy: (10:29)
So tell me a little bit about social media and leveraging online communities. How does that take place?
Shazia Ahmad: (10:37)
We are able to do this all in-house and we’re able to leverage social media, different avenues like Facebook, Twitter, different platforms to really engage potential participants for clinical trial, but also to create education and awareness about a particular disease or indication. Because the touch points are so different, we want to make sure that we are working in a way, not just to recruit patients, but a lot of our campaigns are around education and awareness as well. And we’re able to do that by identifying even potential participants, leading them to a pre-screening depending on the program. And as a result, we’re able to send qualified participants to a study site, but a lot of the rare disease programs what’s really important is leveraging those strategies with patient advocacy organizations. And we do that by working together to create that information.
Janet Kennedy: (11:35)
Now I know from experience in managing social media platforms and particularly closed groups, that’s a lot of work that takes a lot of information, a lot of moderation. I’m curious when you are working, are you working as a member of an existing community? Or are you actually hosting the organization or the social media group yourselves?
Shazia Ahmad: (12:00)
We’re hosting them ourselves, but we have to work very carefully and we have to leverage guidelines that are in place with the sponsor and ensure that everything is in accordance of all guidelines with their medical legal, and then we have to follow the IRB.
Janet Kennedy: (12:18)
That’s Something that takes a long-term commitment. You can’t just throw up a group for six months and then be done with it. This is really a very strategic role that needs a lot of support over time.
Shazia Ahmad: (12:30)
Exactly. And the importance is making sure that we get the buy-in from the patient advocacy group, because a lot of the education awareness really, we wouldn’t be able to get so far without having that collaboration in place. So we work hand in hand with the patient advocacy group in a lot of cases, the sponsors already have a lot of relationships already in place. So a lot of it is done in a very much collaborative manner, so that we’re all working together.
Janet Kennedy: (12:59)
You’ve been in the industry for a few decades. So we won’t do an age test here, but you’ve been around the block a little bit. I am curious that, gee, at least a decade ago, pharma was talking about going beyond the pill. And I think slowly coming to acknowledge that there’s a bigger role that they need to play in engaging and supporting patients. So just broadly speaking, I’d be curious about your thoughts on the evolution of the pharma patient role over time and where do you think we’re going?
Shazia Ahmad: (13:34)
Yeah, I think, and I’ll kind of answer that question backwards because it’s just so exciting. I feel like pharma is going in a way where every single patient that walks into a clinic will have the opportunity to be able to consider a clinical trial. And that’s pretty amazing because 10, 15 years ago, that would not even be possible to think about because of not just different geographic locations and other challenges and barriers, but I really feel that every patient that walks into a door will be offered a clinical trial to participate in. And there’s been so much invigoration of technologies coming forth now to allow for that, which is really exciting, especially with the decentralized approach to clinical trials. But that’s the most exciting thing that I see. But because I started my career early on as a research coordinator at the National Institutes of Health, I spent about five years early in my career at the NIH cross Naiad. Yes, I worked under Dr. Fauci! Really better than that!
Janet Kennedy: (14:41)
Yay!
Shazia Ahmad: (14:43)
And across different institutes, including the NINDS, but really exciting is to see with the recent pandemic, even more of an awareness amongst the public community, to what clinical trials can bring and do for the communities to amazing. And I think because of that, we’ll see more, more interest and just more urgency to help drive progress for all diseases.
Janet Kennedy: (15:13)
Absolutely. I have never heard so many people in my Facebook group, in my Twitter group going, “Hey, I got to be in a clinical trial for a vaccine!” Anything that got them a teeny bit closer to being able to experience a vaccine, even if there was a, whatever, the percent – 50, 50% chance – that they weren’t getting it; very, very interesting. Plus in this particular instance, people got savvy really fast. “I’m in a clinical trial, and now I’m going to go get a quick test to see if I got anything.” And they had to really rethink how they were working with patients in that regard, because you can only be so blinded when I can go to a local drug store and get my antibody test.
Shazia Ahmad: (15:53)
Right. Exactly.
Janet Kennedy: (15:55)
Well, it’s horrible, what happened and is happening as a result of COVID. But unfortunately, when you look back at the history of medicine, it is usually something like a pandemic or a world war that has advanced quickly medical changes and medical innovation. And so as horrible as this has been, and we don’t want to minimize it in any way, it has shown a light on a very important aspect of healthcare, and that is early stage medical development, and really brought it front and center to a lot of people who would never have thought about it one way or the other. I think the other thing that’s interesting is it has also focused on the rare disease community very early on when we were talking about the need for masks may not have been to protect you, it’s to protect people from you, and particularly those that were immunocompromised. I think that’s a word that a lot of people had never heard of. And I believe it has raised awareness that there are a lot of people who’ve been impacted and are impacted by rare disease.
Shazia Ahmad: (17:04)
Absolutely, absolutely. And I think what really, what the other lesson learned from there is if we continue to work as hard as we did for the amazing vaccines that were created for COVID-19, we can make even more greater progress for the rare diseases or any other disease.
Janet Kennedy: (17:24)
It is going to be a curious conversation that we’ll have, is this vaccine was turned around in a year – under a year. I mean, that’s amazing, that’s unheard of! Some of the rare disease community have been waiting decades for something to happen. Now, again, money is the root of a lot of the issue and that obviously there was a massive global incentive to really support development of a vaccine for coronavirus. However, the process I hope is going to raise that awareness and that look at the difference. For instance, the ALS community faced when you had this viral ice bucket challenge go out, they raised a significant amount of money and they were able to make some significant impact on the study of the Lou Gehrig’s disease.
Shazia Ahmad: (18:13)
Exactly. Amazing!
Janet Kennedy: (18:15)
Well fingers crossed that we will definitely see some good come out of this horrible situation with Corona virus. One of your special expertise is ensuring that the patient journey and the pathway to diagnosis is understood in every program that you implement at UBC. I don’t know what that means. Can you explain that?
Shazia Ahmad: (18:37)
Absolutely. This is an area I’m extremely passionate about and really something that I like to always take the team to think about early on looking at the disease, from diagnosis to really mapping out the whole patient journey. Because rare diseases often take many years to be diagnosed, it’s really important that we look at every indication, look at the different care patterns, which doctors the patient is going to for that particular indication, and then also looking at the involvement of the caregiver/care partner. It’s just really important for us to do that, to really develop the right strategies and solutions, to support a specific protocol with a sponsor. And then also take it a step further. It helps us to really develop the right engagement tools for our program. We develop all full house materials to help recruit, retain patients. And we want to make sure the materials we developed to support a participant during the clinical trial also resonate with that patient journey.
Janet Kennedy: (19:49)
I’m in marketing, so this is something I can relate to is developing communications materials. And we are changing. Our younger generations – they’re all about video and they’re not going to want to read a brochure. So are you actually looking at producing materials in all different formats so that whoever, whatever age somebody is, they can find the way that they can relate to?
Shazia Ahmad: (20:12)
Absolutely. So we develop video, we do video services where we are able to develop educational videos to not just identify patients or create an education about a particular study or registry, but we also develop videos to really help understand the protocol. And the informed consent process, for example, is really cumbersome and hard to understand. So a lot of our tools, we engage digital technologies like videos and other technologies to really, once the patient’s even enrolled. For the younger patients, we’ve used gamification to keep patients retained during a clinical trial. So a lot, a lot of those things really, really important.
Janet Kennedy: (20:57)
Okay. And I know a little bit more about the gamification, because I think that’s very cool and I’ve definitely followed that in other industries, not so much in healthcare. So how would that apply?
Shazia Ahmad: (21:11)
Basically, depending on the number of visits for a particular protocol, once the visits completed or prior to a visit there’s questions. And this could be for example, on a pediatric program where we could incorporate gamification technologies on completing a particular questionnaire – some tokens are sent through the platform, and then at the end of the study, or during the study, depending on how we have it set up, the participant can redeem a certain gift card, or there could be some kind of value added to something where that could be provided as a donation in their name to a particular cause or organization.
Janet Kennedy: (21:52)
I think that is cool! I really like that idea, and definitely want to see an image or a video of what that looks like. So hopefully it will be something we can link into the show notes when this is done. You are going to be speaking, coming up at DIA, what sort of things are you going to be talking about?
Shazia Ahmad: (22:08)
Yeah, So I’m really excited. We are looking into speaking on how we have developed patient communities and that platform, and the importance of patient community building for particular sponsor.
Janet Kennedy: (22:24)
That’s going to be good. I am so fascinated with the work of patient communities and the fact that they now are starting to have a very strong role in drug development. That is just one of the best innovations is the recognition of the patient advocate as an individual or as a group.
Shazia Ahmad: (22:41)
Yeah, very excited about that. Thank you.
Janet Kennedy: (22:45)
Well, Shazia, I am fascinated with your work and I very much appreciate your presence in social media because I’ve been able to follow you and learn a lot of things about what you are up to and your thought leadership in the space is very appreciated. And I thank you.
Shazia Ahmad: (23:01)
Thank you so much. Thanks for having me on today. Really appreciate.
Janet Kennedy: (23:05)
It was our pleasure. And thank you for downloading this episode of the People Always, Patient Sometimes podcast. If you enjoyed our conversation, a review and a rating on iTunes will help us find more listeners. This podcast is a production of Spencer Health Solutions.