Bringing power to the patient in all areas of healthcare and research has become one of the fastest growing concepts and conversations amongst industry leaders over the past few years. Patient engagement has become an integral part of shaping the future of healthcare and more recently in the design and landscape of clinical trials.

In a panel discussion at Arena International’s OCT West Coast virtual conference around engagement with patient advocacy groups and influencers in clinical trials, executives from across the spectrum of pharma and clinical research organisations (CROs) discussed best practices in this area. Below are some of the key insights from the panel.

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  • Terns Pharmaceuticals VP of clinical development and operations Diana Chung
  • Medidata senior director of patient engagement (and three-time cancer survivor) Alicia Staley
  • Novotech project manager clinical Michael Obedoza

Bringing patients onboard at the earliest stages of trial design

Alicia Staley: We are at a point in this industry where we are really starting to recognise the importance of the consumer or the ultimate customer’s perspective in everything we are doing in clinical trials.

There is an opportunity to hear from patients at a variety of touchpoints in this clinical trial journey – it’s really important for us to recognise how valuable this perspective can be.

From how they are approached about participating in clinical trials (CTs), what’s their experience participating in a CT and when the experience is over, what would they change from the patient perspective.

Patient engagement
Medidata senior director of patient engagement Alicia Staley. Credit: Medidata


Michael Obedoza: One of the challenging aspects when we conduct CTs is recruitment and we want to remain engaged with the patient not just for the purpose of keeping them on the study but also to get their feedback – it’s critical for planning the next stage of the trial.

In previous clinical trials when we worked closely with patient groups it worked well for the sponsor and the patients. There is a lot of potential there and something I think every sponsor should look into.

From a CRO side, how often we work with patient advocacy groups generally depends on the patient population. If the patient population and the therapeutic area is pretty rare we are more inclined to work with patient advocacy groups because of the limited amount of patients available.

Diana Chung: A particular trial I worked on we had patient focus groups and for our team it was an eye-opening perspective to understand where the patient was coming from, what was important to them and how they viewed clinical trials. That really helped us to work better with our clinical sites as well on understanding that patient perspective.

Engaging constructively with patient opinion leaders and groups

AS: Before you reach out to a patient group or organisation you really have to be clear on what the ask is, given the amount of work these groups are doing on behalf of the patient. Why you are approaching them, why do you want to work with them and what are the problems you are trying to solve?

Be as open, honest and transparent as possible about what a collaboration would do for both parties. It’s really about building relationships to glean these insights from what it’s like to live with an illness or chronic condition and how a clinical trial can fit into a patient’s treatment journey.

There is an element of efficiency needed when dealing with some of these advocacy organisations. A Tagline I always go back to is — in the life science industry time is money but when it comes to a patient, time is life. It represents that what you are bringing to table for these patient advocacy organisations can potentially impact a person’s life in a big way. As long as you are prepared to put in the work with these groups the fruits of that collaboration are immense.

Getting informed about patient advocacy groups

DC: I did a project on recruiting NASH (Nonalcoholic steatohepatitis) patients for a clinical trial, a condition I didn’t know a lot about.

But I knew how to find the advocacy organisations. You can quickly uncover some of the leading organisations that might be dealing with a condition. Dig into their website, look at the mission statement. It quickly becomes very clear what their focus is. It could be on patient experience or proposing new research opportunities for that disease state.

AS: A lot of these organisations are getting really savvy and have very specific targeted mission statements and clear goals they want to achieve as an advocacy organisation.

It’s almost doing a community scan looking to see who the players are and does their mission match up with what you need for a project or clinical trial.

Patient engagement
Terns Pharmaceuticals VP of clinical development and operations Diana Chung. Credit: Terns Pharmaceuticals


MO: From a CRO perspective we often rely on the key opinion leaders and principal investigators who work with these patients. A lot of these patients are long term patients of these doctors so they already have a powerful advocate in the doctors themselves who are passionate about what they do and talk with other doctors in the area. We work a lot in Australia and doctors in Sydney would exchange information with doctors and share site availability with other regions like Adelaide. Doctors over there will meet once a month and talk about the clinical trials they work with and specific patients that might be a good fit.

DC: With social media we have broken down a lot of the barriers to create a much more collaborative environment not just amongst investigators and sponsors but also among the patient advocacy groups as well.

Patients are the new influencers and I have seen three different aspects as to how they can do that – with other patients who share the condition; with physicians who are looking to expand their knowledge, as patients could have a number of health issues so they can educate doctors more broadly; and with regulatory agencies.

What I’ve found  in reaching out to different patient advocacy groups is that one founder’s comfort level is speaking to patients while another believes they can have the most impact by speaking to the regulators. They have different focuses so understanding their mission is really critical.

Social media and building long-term relationships

MO: When we go from Phase I to Phase III we tend to keep the same investigators because they are familiar with the drug, the safety profile, and the patients.

I have been thinking about how we hook up patients to these advocacy groups to help them get more information. One of the first things a patient will see before starting a clinical trial is the consent form. Something they must all sign to be part of a trial and they often have a link for more information such as to Maybe as a new standard moving forward, we could introduce a link to a patient advocacy group that has been verified and vouched for by the sponsor, the patients and all parties involved.

We would have to get everyone on board and the information meticulously looked at because

one of the dangers of social media is misinformation. It would be to start discussing how we can reach all patients who start this clinical trial and tie them together. The more patients collaborating on what they do and providing feedback to the sponsor, the better.

Patient engagement
Novotech project manager clinical Michael Obedoza. Credit: Novotech


AS: The pushback I have heard over the years to building long-term relationships with patient groups is that it might be the only time a sponsor is recruiting for a specific therapeutic area. Therefore they say it makes it very difficult for them to spend the time and energy to build some of these relationships if it’s a one-off situation.

That’s part of the business that is difficult for me to wrap my mind around but it happens.

The time and energy that goes into building these longer-term relationships will help elevate the industry. It’s a difficult business proposition to take on at times because of the nature of how the business operates.

Given that, I suggest that companies that might be restrained with time and resources really look at social media as an opportunity for listening to the communities that you want to engage with. If you spend any time on any of the main social platforms and watch any of the conversations that evolve organically, you would be very surprised at the level of engagement patients and advocacy organisations have around a number of different therapeutic areas.

There is a wealth in those relationships and with a little extra energy, as a listener in these conversations you can learn a lot and it gives you the opportunity to step in and be a valuable partner.

DC: Based on business needs, patient engagement can be a difficult one to manage with your internal stakeholders. So planting the seed is what needs to happen first and hopefully over time as more and more patient advocacy groups are getting involved in studies, the value that they are adding will become more apparent to the whole process of drug development.

MO: With the new generation that’s coming through they are all on social media so it’s just a matter of time before it becomes commonplace.