Young people comprise a unique demographic that pharma is not used to serving but new digital tools offer ways to understand, engage and serve them better
Despite creditable ongoing efforts by pharma to represent the broadest and most diverse population of patients in research and care, younger patients still often don’t get represented and consulted as they might.
Only by building a closer understanding of them will pharma be able to serve them better. And it can only do this by first finding and listening to them.
There’s an obvious, if still under explored avenue here. “If you think about where younger people are, they're on social media,” says Seth Rotberg, who co-founded Our Odyssey, a nonprofit organization dedicated to connecting young adults impacted by a rare or chronic condition.
This extends to their healthcare activity and when diagnosed with a new condition, young adult patients are digitally savvy, searching on Facebook, Instagram, or Twitter, says Gail Trauco, CEO of The PharmaKon, a company that increases diversity inclusion for patients in clinical trials.
But pharma is not used to engaging with younger Gen-Xers and Older Gen-Z and its messaging is often a turn-off for them, says Rotberg. “I don't feel I can necessarily relate to pharmaceutical industries, because a lot of what they're trying to market is marketed to a different population.”
And younger people have a different set of needs compared to children or older adults, he adds. “If you're trying to market to young people, you have to think about where they're at.”
How best to reach them then? Working with patient advocacy organisations to share patient stories as well as working with individual patient advocates is one solid approach, says Trauco.
Patients should be able to share their stories across platforms, but also inspire action. To this end, Rotberg seeks to infuse the voices of patient advocates into the work pharma is already doing.
Sharing their experiences in this way offers a powerful means to help their peers feel they are not alone, as well as to demonstrate the resources and therapies out there that they may not have known about otherwise, explains Rotberg.
This pursuit of ‘relatability’ is for him the link that pharma is missing and it shines best on social media channels since patients relate better to hearing other’s stories directly, he says. “It will be more relatable to someone if I'm sharing my story than if a pharma company is sharing my story from their platform.”
Making trials work for younger adults
Younger patients’ deep digital connectivity potentially makes matching younger patients to clinical trials easier, says Victoria DiBiaso, Global Head of Patient Informed Development & Health Value Translation at Sanofi. “I think this is an area that is poised to evolve rapidly.”
But this will only happen if pharma first establishes a relationship and a rapport with them. “We hear from individuals that one of the main reasons they have not participated in clinical trials is simply because they were not asked.”
Then, working to understand the challenges patients face with clinical trials, whether belief-based or logistical and then collaborating with younger patients to create effective solutions is crucial to engagement, says DiBiaso.
Improving clinical research education and bringing awareness directly will help. So will making it easy for patients to search for opportunities for trials and then integrate the clinical trial into their daily life.
For Rotberg, the concern lies in the start of trials when principal investigators are eager to work around the participant’s schedule. “By the end, it tends to be the other way around. They’re not taking into consideration I’m working full time. I can’t just take a day off.”
Younger people would participate more in research, says Rotberg, if they knew where to look for studies and understand what it means to participate in a trial. “It comes down to designing the trials with the community, and not necessarily for the community.”
Working with a community, he adds, means gathering feedback, designing trials with a patient perspective and supporting patients throughout the trial, not just at the beginning. “There's a lot of young people who do want to participate, but you have to keep in mind travel expenses, reimbursement, how far away is the site is, the communication, and the mental health support.
“There are all these different factors that go into it. It goes back to designing the trial with all this in mind,” explains Rotberg. “There are opportunities to innovate, to do more collaboration. But sometimes I feel like we work in silos.”
Integrating with technology
DiBiaso sees a way forward here. “The use of electronic health records and other real-world data sources are helping us identify where individuals live so we can best tailor our outreach strategies and site selection.”
It would be nice, she adds, to see this area evolve so that eligibility can be determined using technology and based on that criteria, provide a prompt invitation to a patient and their care provider about eligible clinical trials through data in the patient’s health records.
Sanofi is integrating its solutions with advocacy and other patient registries that notify individuals of clinical trials, says DiBasio. “The technology brings the study information to the individual, along with an online pre-screener that can also connect them to a recruiting site. It brings the study information to the individual, thus reducing the burden and increasing the awareness of opportunities.”
Through patient advisor collaborations, study information is tailored so it answers relevant patient questions in order to inform their decision to participate.
Technology can also be wielded more powerfully to gather patient data during trials. Instead of paper diaries, electronic data collection platforms are more convenient for patients. Whether it’s an app on a patient’s personal phone or handing out study phones, technology is always to pharma’s advantage, says Trauco. “It’s a great way to reduce hospitalizations and increase longevity because people have better health information upfront.”
The value of mobile nursing
Trauco is well aware of the challenges it takes to reinvent clinical trials. It’s why she says mobile nursing is crucial to bringing clinical trials directly to the patient, and younger ones in particular. “What mobile nursing allows us to reach is the LGBTQ+ population and young service industry employees. These are bartenders, servers, folks working at hair salons or in our grocery stores. They're working odd hours. So mobile nursing fits their lifestyle.”
The critical part of allowing someone to participate in clinical trials is scheduling those home nursing visits around the patients’ schedules. “Most clinical trials have visits that can be done in that patient home,” explains Trauco, whose company is utilizing mobile nursing services.
Biological samples can be collected and sent off all while maintaining sterile processes and HIPAA compliance by using nurses to collect this data.
Partnering with community nurses in this way is not only beneficial for patient convenience but can also reach those in rural or underserved communities, those who are least likely to engage with pharma. “It's people that actually talk the talk, that live in these communities, that that are able to engage with the patient.”
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