In the biotech industry, if you are not motivated by helping patients and potentially transforming their lives, then you’re in the wrong job. Yet understanding what people go through on their journey – particularly those living with a rare disease – is never straightforward.
We all hear daily talk of patient centricity and keeping patients at the heart of everything we do – but the reality is that what patients and caregivers need is often very different, even in single diseases. It also constantly changes, and COVID-19 is a clear example of where unexpected challenges have re-written much of what people prioritise as important.
As we come out of what has been a very dark year for many people, particularly those with a disease who have been extremely vulnerable to COVID-19 infection, we can reflect on what was done well and what could have been done better. Patient centricity is continually evolving and as an industry, we must evolve with it if we are to leave a legacy where we can say we made the biggest difference we possibly could.
Perhaps the most significant positive that has emerged for me from COVID-19 is that the whole experience has brought us closer to our patients and the communities that we serve. It has strengthened our connections and our ability to see what they go through. We have listened more intently, understood more fully, reacted with incredible speed, and innovated in exceptional ways. I’m certain that as a result, we know far better the experiences that patients and caregivers go through, and what really matters to them when life is at its most challenging.
Already we are capturing insight from a wider and more diverse set of people, including not just patients and immediate family members, but other caregivers and people impacted by rare diseases.
And we want to share the insights we gather. Partnering with patient groups we have been exploring how to do this. Our campaign One Step Further in the UK is a perfect example of this – realising that a disease like ATTR amyloidosis can have a far-reaching impact and that, if we take time to look, we will see the reality of this laid bare in the stories of loved ones, caregivers, children and friends. Creating this window lets us all learn more about what we can do to help. The challenge now will be to ensure that we continue to build these connections – not just with patients but with everyone impacted by the conditions we strive to improve.
From clinical trial design and coordinating regulatory approval through to managing reimbursement and care delivery processes, the moment we lose sight of who we are doing this for we decrease our impact. There is still much to learn here, and the reality is that patients and caregivers are – encouragingly so – becoming more and more involved at each step of a medicine’s journey.
Our job must be to encourage this. To build this empowerment, educate and upskill those on the front lines of diseases – and trust that doing so will bring benefits for our industry as well as those in need.
At Alnylam we have looked to adopt this mentality, creating new platforms aimed at driving open and instructive interactions with patient advocacy leaders. This has ranged from facilitating business school training sessions to improve inclusion in health technology assessments to working with partners to remove industry jargon where it may be acting as a barrier to patients engaging with important processes along a medicine’s journey.
Even before the pandemic, it was apparent that technology was set to radically change the delivery and personalisation of healthcare. But it has acted as a catalyst in certain sectors – forcing our industry to bring forward technological innovations, moving communications and patient interactions online and reshaping healthcare in many other ways.
The recent launch of our digital symptom tracker app, STAR, to support people with ATTR amyloidosis and their families is an example where we have identified a need and acted with urgency, delivering a tool that can help patients from an early stage in their disease see, record and – if they choose to – share their symptom changes with their healthcare team. Beyond diagnosis and disease tracking, we have also built an interactive Family Dialogue Tool to help individuals have important (but often incredibly difficult) conversations about their conditions with a broader family network.
Shielding patients have of course often had to, in many cases, receive care at home. As many of us across the industry know, implementing homecare in complex disease areas is no mean feat. But there have been many cases where we have achieved it in record time, and with great success. Yes, there are still important considerations around duty of care and appropriate management of patients from home; however, industry and health authorities have had their eyes open to new possibilities and have worked together to make homecare for many a reality. Having heard stories of people travelling hundreds of miles every few weeks for their appointments, the impact could be life-changing.
COVID-19 has raised some serious questions around discrepancies in the way certain minority groups have suffered more than others. This is a longstanding issue that transcends many diseases, rare and otherwise. It is one that Alnylam – like many others – is keen to act on. We are now taking further action to explore every opportunity to inspire participation in our activities from a more diverse group of patient populations, so that everything we do represents a broader range of people, ethnicities and backgrounds. We are striving for more equity in the system, fuelled by an omni-channel approach that encourages fairness.
The last but perhaps most important point I want to make about patient centricity and the industry’s efforts to bring in the patient voice is recognition of the pivotal and inspirational role that healthcare professionals play in this process.
Reaching patients and getting them engaged and empowered almost always requires healthcare professionals who see the value in doing so. Time and again they go above and beyond to make sure that people have their voices heard. They hold us accountable for acting on the promises we make and without them much of the progress we have seen would not have been possible.
Many lessons have been learned from the last year but a central one is that we can always improve patient centricity. I believe we have an exceptional opportunity to do so and that, working alongside the clinical and patient community, we will create change in the coming years that many of us would not have thought possible.
Kasha Witkos is SVP, head of CEMEA at Alnylam Pharmaceuticals