Patient-Centricity: An Appraisal
It has highlighted the gulf between patient compliance and patient experience, but has it broadened the focus beyond disease states?
“Oh, don’t get me started,” says an exasperated Carole Scrafton down the line when reflecting on pharma’s traditional approach to patient compliance.
For Scrafton, who heads up FibroFlutters, a support group in Sunderland, UK, for patients with chronic and rare diseases, an over-emphasis on the science of getting people to take their medicine as instructed has created a chasm between pharma and the patient experience.
Part of the problem has been pharma’s inability to break out of narrow disease silos to focus more holistically on the patient experience.
“Pharma need to go and out involve all the stakeholders – that means the patients,” says Scrafton, who was a participant at October’s eyeforpharma patient summit in London. “There’s still much to improve on, but I would say that there’s a lot more energy about it now than there used to be.”
As alluded to by Scrafton, there is evidence to suggest that the penny is finally dropping in the pharmaceutical industry. The idea of a cross-disease approach – through which dots are drawn between different symptoms and associated experiences – was a recurring theme at October’s conference.
In other words, pharma can no longer operate under the assumption that it knows best when it comes to patient compliance; rather, it needs to listen carefully to the patient’s needs, which are often complex and can transcend a particular disease state. For instance, a patient with multiple sclerosis or Parkinson’s may be also prone to fatigue, or anxiety and depression.
“The grace period is over for pharma to get their head around this,” states New York-based Jen Horonjeff, founder of Savvy Cooperative, a patient-run platform. “For far too long, it’s been something that we’ve heard companies talk about, but few have taken any actionable steps to deliver on these promises.”
But, like Scrafton, Horonjeff’s retrospective misgivings are tempered somewhat by what is perceived to be an attitudinal shift within the pharma ranks. As patient voices have gotten louder, companies are beginning to realize that to ignore them would be to their detriment.
And ideal starting point for pharma looking to become more proactive in this area might be to engage with patient advocates such as Horonjeff and Scrafton, who are both chronic illness patients themselves (Horonjeff has arthritis, while Scrafton has genetic disorder Benign Hypermobility Syndrome aka Ehler's Danlos Syndrome, and Fibromyalgia).
“I actually just got off a call with a pharma group that’s really trying to do the right thing,” says Horonjeff, who was also crowned 2018 North American winner of eyeforpharma’s patient advocate award.
“And all I said to this was that it might not be perfect straightaway, but it’s just about starting somewhere. That means actually going out and talking to the patients. The tweaks that might be needed can come later.”
It also works both ways, believes Scrafton, who says patient-led support groups need to set aside their scruples and look to “engage with pharma, rather than confuse them”. Can she elaborate?
“I’ve been on panels at conference where so-called patient experts have been up on stage arguing amongst themselves over what qualifies them to be an expert in the first place,” she says. “Some believe it to be people with PhDs to their name, while there are people like myself, with chronic illnesses, who have become experts out of necessity rather than choice.
“Actually, neither side is wrong, but I don’t think pharma wants to be seeing patient experts arguing up on stage. This is what risks alienating them rather than involving them in a healthy debate.”
Scrafton is a firm proponent of pharma harnessing social media as a means of getting to the pulse of patient needs. As a platform where today’s society tend to air their thoughts and feelings – whether ill-conceived or not – pharmaceutical companies already have vast sets of public data at their fingertips to mine from.
“This is where the patients are – and they’re not going anywhere,” she says. “To get to the patients, you have to come to them. They aren’t going to go to pharma, especially when they don’t trust these companies. “
“I think social media and the act of social listening is one method pharma can use to signal what is going on in patient communities, but it is not the whole story,” says Horonjeff. “It allows them to mine lots of data and hear what patients are talking about, but it’s not the only way we should be learning from patients. It doesn’t cover the full spectrum of factors behind how a patient might actually be feeling.”
This would infer that while social media experts might become more prominent in the pharmaceutical industry, companies will need to do more than scroll through daily Twitter feeds. Such social media patient platforms also need to be better connected to yield any true reward.
Scrafton agrees. “Embracing social media is only part of the solution, but in my opinion, it could be a great first step for pharma to take.”
Cross-community collaboration is also vital, says Scrafton, who has discussed with the National Institute for Health Research the potential of setting up an online “communities map” in her native North East as a means of helping charities and patient support groups such as her own work alongside each other, sharing the same information pool.
“There’s nothing to suggest that these community maps couldn’t be rolled out across the rest of the UK either,” she says. “I think pharma would be crazy not to use such a system for resourcing the likes of patient pools and survey responses.”
If Everyone Cares, a Community interest Company (CIC), are currently developing such a community map through its community building portal aDoddle. Crafton is helping to grow the community through her own social media presence in the chronic, invisible and rare illness space.
Lessons of history
In the past, pharma may rightfully have been criticised for being tunnel-visioned in its approach to patient compliance. This, believes Horonjeff, created a culture of blame in which companies gave short shrift to patients unable to follow treatment plans – often in spite of mitigating circumstances.
If pharma is to truly look at the patient more holistically, it cannot afford to repeat this mistake, she says.
“This always makes me think of one of the pharma industry’s favourite terms – calling patients ‘non-compliant’,” she says, prefaced by an audible sigh. “That means you’re basically ascribing all the blame onto the patient. Being unable to follow a treatment plan doesn’t automatically make someone a bad patient.
“There are so many other factors that surround a patient’s ability to follow a treatment plan. It comes down to access – both in terms of medications and access to care – healthcare coverage, how far they might be from their physician, whether they need prior authorisation. Then, on the other spectrum, are all the personal and psychosocial factors that need to be considered. How does treatment impact on relationships, work and other activities?”
The area of patient-centricity has undoubtedly been prone to empty rhetoric, as laid out by Horonjeff and Scrafton. Pharma is beholden to right this wrong and listen to what patients are saying. It could make all the difference in ensuring treatment plans for complex conditions are successful.
To find out more about Jen Horonjeff’s patient-run platform Savvy Cooperative, click here.
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