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Everything you need to know about patient groups and clinical trials

Patient advocacy groups (PAGs) and pharma/biopharma/biotech and MedTech industries are all working towards the same goal: to improve health outcomes. And as PAGs are key stakeholders in the clinical trial space, you might be wondering how you can work in tandem with them for your clinical trial, and what exactly they can help you with?

In this article, you’ll learn:

  • the importance of patient advocacy groups.
  • the key roles they play throughout the clinical trial journey.
  • what it takes for you to work effectively with them to achieve clinical trial success.

What does patient advocacy mean?

Patient advocacy groups can be small or large organisations of people who educate, advocate for, and provide support services to patients and their caregivers. The patient advocates working within these groups can be those who work very closely with patients and advocate on their behalf, or they may even be patients themselves who have experience of living with a certain condition (which is often the case for smaller organisations). Either way, their knowledge and ability to give real-life insights from a patient or caregiver’s perspective, means they are qualified to assist with activities in the pharma industry and ensure their voices are heard.

Essentially, they help to bridge the gap between patients/caregivers and industry. This is a win-win situation for both sides, since industry can gain valuable insights from patients and caregivers for their clinical trial, and patients receive an improved clinical trial experience, staying up to date with important information in a way that’s easy to understand.

Patient advocacy groups and clinical trials: Partnering for patient access

PAGs play a number of key roles throughout the clinical trial journey. But to keep things simple, here are five ways that PAGs play their part in achieving clinical trial success, and in turn, help to improve the lives of patients and caregivers.

#1 Patient advocacy groups educate patients on clinical trials, and make sure they receive the clinical trial results

When a patient is first diagnosed, PAGs can be a place to turn to and rely on for the next steps. So, one key role that PAGs play is to stay up to date with the latest research and innovations, so they can provide relevant support and resources to patients. And that includes the latest clinical trials. That means they can also be help you as a pharma company to recruit patients who might be interested in your clinical trial.

But, it doesn’t stop there — PAGs also make sure that patients are informed of clinical trial or survey results that they’ve taken part in. And they provide these results in a way that’s easy to understand, or organise meetings to share the findings and answer any questions people might have.

#2 Patient advocacy groups help to develop new methods of recruiting and engaging patients in clinical research

Imagine this: you need to recruit patients for your clinical trial, but don’t know how to reach them? PAGs can help. Or maybe you need to think of ways to keep patients motivated throughout your clinical trial, but don’t know the best way to go about that? PAGs can help.

As PAGs work very closely with patients, or are patients themselves, they have an in-depth understanding of their condition and how it affects them, their likes, their dislikes, and even how they prefer to be engaged with. Sometimes the details are so granular that you can find out whether they like to be referred to as “patients” in communications, how much information they’d want to see on a poster or in a leaflet, how often they want to be contacted, and whether they prefer traditional communications or if they’re tech-savvy and want all the latest digital updates.

Plus, sometimes, the PAG members who are patients or caregivers themselves, are often keen to take part in research. Overall, by working with PAGs, you can develop new methods of patient recruitment and a successful patient engagement plan. They really are the gatekeepers to recruiting patients for your trial and keeping them engaged.

#3 Patient advocacy groups ensure patient voices are heard

In addition to providing support and resources, PAGs also campaign to make sure that patients’ needs are being recognised, heard and supported by industry.

For example, did you know that you could improve patient adherence by involving patients in the decision-making for your clinical trial design? That’s because you’ll be creating a patient-centric clinical trial that meets their needs.

However, the key here is to not only make sure the patients are having their say, but that their insights are actually listened to and incorporated where necessary. And that’s where PAGs come in

There are a number of touch points throughout a clinical trial where sponsors should listen to PAGs and understand the patient population. For example, the frequency of visits and number of clinical trial procedures can be a burden for some patient populations who are still able to work and live a relatively “normal” life. Whereas for others, their condition may have forced them out of work, meaning they potentially have more time to collaborate during focus groups or take part in clinical trials. Plus, some patient populations may have different motivations depending on their condition and how it affects them; for example, those living with a terminal condition may have a different outlook compared to those with a manageable condition. So, you need to listen to these valuable insights that PAGs can provide, truly understand the patients you’re engaging with, and meet their needs throughout the clinical trial journey.

#4 Patient advocacy groups build trusting, long-term relationships

PAGs help to build strong, unified communities that work together to improve patients’ lives, which makes them a large influence in the clinical trial space.

But, how does this help you? Well, if you can maintain a relationship with PAGs, like they do with patients, you’ll have easy access to patient insights, and it’s likely that they’ll begin to trust you and your clinical trials. Plus, PAGs no longer take a back seat and they demand to be part of conversations with industry to make necessary changes. So, having that long-term relationship and willingness to collaborate is the key to success, and beneficial for both sides of the party: industry have extensive scientific knowledge and resources to share, and in turn, PAGs bring unique patient perspectives to the table, providing real-world insight into the needs of the patient community to develop relevant solutions.

#5 Patient advocacy groups offer advice, support, understanding and empathy

While the main aim of a clinical trial is to improve patient outcomes, it can often be forgotten to think about how patients are feeling throughout their journey. And again, that’s where PAGs can help.

From the very beginning of their diagnosis story, patients will likely turn to PAGs — not only for practical advice, but for emotional support too. And as PAGs know what the reality is like, their empathy and understanding can be invaluable for patients. So, working with PAGs offers a real chance for success, as you can rest assured that you’re providing both practical and emotional support for the patients who are taking part in your clinical trial.

What you need to do to work effectively with patient advocacy groups

Now you know what PAGs do and why they’re so invaluable for clinical trials, how can you begin to work with them? There are a number of things you should consider when working with PAGs, to ensure both sides make the most of the collaboration.

#1 Do your research and engage constructively

Different groups can have a different focus on what they’re advocating for, so before you reach out, make sure to learn more about the PAGs on social media or on their website, and find out what their mission is. Then, when you reach out to them, make sure you’re engaging constructively. You need to be open and transparent about why you’re approaching them and why you want to work with them, and explain the problems you are trying to solve.

#2 Appreciate the role of patient advocacy groups

PAGs put a lot of time and effort into supporting patients, and as we’ve highlighted above, they play a number of key roles that can help you with your clinical trial. It’s important that when you’re working with PAGs, you recognise and respect their role and use the information they’re giving you; the real-world knowledge they’re providing can make the success of your clinical trial design, and this information should be taken on board.

#3 Nurture the partnership and collaborate effectively

It’s your responsibly to build and maintain the relationship you have with PAGs. And there are a number of ways you can do this: use social media to amplify patient and PAG voices, check in regularly, have open conversations, involve PAGs in your development of processes and protocols, and ensure they’ve got a seat at the table to take an active role that will benefit both organisations.

Patient advocacy groups are the way forward for your clinical trial

Whether PAGs are providing materials, offering support or advice, or relaying important information, their holistic perspective plays a vital part in achieving clinical trial success. And there are opportunities for you to work with PAGs to improve the experience for patients at every stage of their healthcare journey. So, don’t miss the opportunity — when patient voices are listened to and acted on, recruitment and retention rates can increase for your clinical trial, and ultimately you can improve the patient experience

Ready to collaborate with PAGs and gain patient insights for your clinical trial? Get in touch to find out how you can kick-start the process.

This blog was originally published here.

18th May 2021

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