The Patient Summit Europe 2019

Oct 15, 2019 - Oct 16, 2019,

The Patient Summit is the only event you need if you’re looking for hands-on industry examples, the critical success and challenge factors, and the answers to issues ranging from compliance to culture. No more theory, time for action.

Towards Patient Preferred Trials

Putting the patient at the centre of clinical trials could be transformative



The need to reform the clinical trials process with the patient in mind is becoming ever more apparent. Given the expense and time it takes to find and retain suitable trial candidates, making a trial scientifically rigorous is no longer enough. It must also be compatible with a patient’s lifestyle. 
 
Participants in clinical trials are not numbers on a spreadsheet. They are customers, consumers, patients and people with complexities, preferences and nuances. Increasingly they are demanding more choice and more involvement in their treatment journey.
 
New technology that enables pharma to digitise trials and make them more efficient and tailored to individual patients is one way the industry is making trials more patient centred.
 
High touch as well as high tech
But technology alone won’t be enough, warns Kelly McKee, head of patient recruitment, rare diseases, at Vertex Pharmaceuticals.  “We cannot just keep throwing the latest and greatest nominal technology at the problem and think we’re going to solve it,” she says. “If we are going to get to a place in the industry where clinical trials are preferred by patients and are considered to be a choice in their care regimen, we really need both a high touch and a high tech solution.”
 
Global head of patient recruitment at ICON, Gretchen Goller agrees patients must be at the centre of everything. “If we are really going to be patient-focussed, we need to be asking patients how they want to be engaged with and communicated with,” she says. “We can’t just sit in a boardroom and say for this particular study we’re going to create an app and do this and do that without involving the patient in those decisions.”
 
It’s important to resist the temptation to simply imitate the technological innovations in the consumer sphere, cautions Alicia Staley, senior director of patient engagement at Medidata, a company that provides software for clinical trials.
 
“As an industry, when we look for a better, faster, cheaper solution from a technology perspective, we forget there is something inherent about the humanistic nature of clinical trials, and that they really need the empathetic, human touch in a way that you don’t see replicated or encouraged in other consumer-facing industries.
 
“When we enter into a clinical trial transaction from a patient perspective there are so many unknowns that it’s very hard to look at standard business models, or standard consumer interaction models, as a comparison for this kind of interaction.”
 
Pharma needs to explore different approaches, says Staley. “I think that when we look for existing models on which to base our decisions we are doing ourselves and our patients an extreme disservice. We have to start looking at different models of application and different ways to bring technology to these interactions that do allow for this empathetic touch. We know it’s possible because we have seen it in very small pilots but we have to really challenge ourselves to bring this to scale in ways that have never been done before and to develop a model that really works.”
 
A good example is an app launched by Novartis in 2018 designed to modernise ophthalmic clinical trials by making them more accessible and flexible. Called FocalView it aims to allow researchers to track disease progression by collecting real-time, self-reported data directly from consenting patients. 
 
By adapting the design of clinical trials to suit the daily routine of patients, the app may reduce barriers to participation, leading to a more nuanced understanding of ophthalmic diseases and potentially accelerating the development of novel treatments.
 
Better informed means better engaged
There is an even more fundamental problem facing pharma here and that is a lack of patient knowledge about trials. Tackling this first by educating and inform patients about the pharmaceutical industry in general and the value of clinical trials is essential, says Goller.
 
“This is the elephant in the room. Often patients are seeking information but they are not sure what they are looking for. We should be finding a way to educate people about clinical research and the importance of being part of our studies. This is where technology could be used very effectively to set the stage and educate people about our world because a better informed consumer is a better engaged one.”
 
Allowing patients a choice in their clinical trial experience is another important aspect of improving the patient experience and would at least go some way to improving their experience, says McKee. “We can utilise technology to help us give patients a choice.
 
“Some patients may want to have their visits done by a home help, others via telemedicine. Some would rather use an Epro, whereas others might prefer a paper diary. Not everyone has to have the exact same experience in a clinical trial for us to be able to answer the scientific questions at hand.”
 
Involving the patient at every stage of the clinical trial journey will not only help patients feel more involved but will also lead to more positive outcome for companies, according to Lilly Stairs, patient advocate and head of client relations at Savvy Cooperative. “Often companies think they will bring patients in for the protocol and that’s it but there are so many other places along the lifecycle that we can engage patients,” she says.
 
Staley, a three-time cancer survivor herself, believes there is also a great opportunity for the industry to help facilitate patient-to-patient interactions in a trial context: “It’s important that industry remembers to walk a mile in the patient’s shoes. I think the concept of the patient mentor or patient-to-patient interactions is overlooked. 
 
“If only I had a dollar for every conversation I had had in a waiting room, a hospital or a clinical trial site where I picked up a tip or got some great information. It’s an untapped resource for making significant improvements to the overall patient journey and the industry has to get better at capturing these insights to improve individual experiences.”
 

Sharing best practice
While there is an appetite within the industry to transform the clinical trial process to involve patients more deeply, there is clearly a long way for pharma to go yet.  Few companies have established in-house, centralised groups to support the move towards more patient-preferred trials.
 
An eyeforpharma poll has suggested that companies would benefit from the sharing of best-practice across therapeutic areas, guidance at high-level around strategy and internal education about the value of patient-preferred trials to get the ball rolling.
 
A sense of urgency here is paramount, says Staley. “We must never forget that the industry’s business model can represent life or death to a patient so we must be bold and courageous in urgently finding a balance between the business aspects and human interaction. It’s extraordinarily difficult but eminently doable.” 
 

Since you're here...
... and value our content, you should sign-up to our newsletter. Sign up here

The Patient Summit Europe 2019

Oct 15, 2019 - Oct 16, 2019,

The Patient Summit is the only event you need if you’re looking for hands-on industry examples, the critical success and challenge factors, and the answers to issues ranging from compliance to culture. No more theory, time for action.

comments powered by Disqus