In any walk of life, to achieve widespread cultural change among providers and consumers is challenging – the road is long. To arrive at a place where pharma and patients are genuine collaborative partners, however, has required a panacea – a series of evolutionary twists that has eventually led to a host of healthcare missions on which developer and patient have combined to advance pioneering treatments. Patient- centricity – for so long a fast and loose slice of pre-digital filmflam – has found its mojo and, above all, it is placing patients, not just at the centre of the action, but at every stage of it. So how did this leap into the future unfold? Let’s find out.
Centre stage: The patient-centricity panel
Maria Saddiq (MS) is Managing Director at O4 Research
Eliran Malki (EM) is Co-Founder and CEO at Belong.Life
Dawn Lobban (DL) is Scientific Division Head and Patient Partnership Strategy Director at Envision Pharma
Amanda Cunnington (AC) is HEMAR & Advocacy Director at Janssen UK
Gretchen Goller (GG) is Global Head, Patient Recruitment and Retention Solutions at ICON plc
Patients please – transforming the patient-pharma relationship
MS: The wider availability of information, but also the ability of patients to share experiences, has created a phenomenon for pharma. We have witnessed unprecedented transformation, as the modern patient has embraced the digital era to become more empowered and engaged in their own health outcomes. This disruption has permeated every fragment of the pharma-patient relationship. It’s hugely positive, after all, when the patient is at the heart of the process everyone wins.
EM: Until a few years ago, the relationship between pharma and the modern patient was not interlinked. Patients received their treatment and either responded and recovered, or didn’t. There was no engagement, no monitoring, no relationship. Over the last few years this has started to change, and pharma has taken steps to become involved in the patient experience, shedding light on the patient journey and critical decision points – crucial for research and strengthening the patient-pharma bond.
DL: Recognising the value of their collective input, patients have become better organised and better educated, enabling them to drive the agenda and expect mutually beneficial partnerships. With regulators openly embracing patient engagement and more guidance becoming available regarding how joint working unfolds – such as the FDA’s Patient-Focused Drug Development initiative – pharma is relishing new ways of engaging with patients.
AC: Today’s patients are more independent, informed and resourceful than ever. Their needs are different too, and we have recognised that bringing real value to the modern patient requires fresh insights. To reflect this evolution, we started working with patients and patient groups as true partners, co-designing solutions and delivering outcomes that matter. This has helped us feel closer to patients, giving us a greater understanding of their needs and the impact of their health conditions.
GG: The common pharma mission of improving patient lives by bringing new treatments to market hasn’t changed but, by bringing patients to the centre of drug development, there has been a significant shift. This changing dynamic has been reflected in the appointment of senior executive roles with a pure focus on interacting with patients at every stage of development, from early planning during clinical trials to the post-marketing phase.
Altogether now – bringing down historical barriers and igniting the future
MS: Patient participation has become integral. Ultimately we are responsible for developing an intervention exclusively for the patient’s benefit and without their input, how else do we know if we are designing the right solution for an unmet need? How else can we be confident we are designing a feasible clinical trial protocol and participant pathway? That is precisely why we are asking the right questions early on – to arrive at a solution that the end user will benefit from.
EM: Things had to change in the patient-pharma dynamic. The world is evolving – the patient is now a consumer who proactively manages their whole treatment journey and, quite rightly, has a lot to say about what they’re experiencing! Engaging patients to understand their needs every step of the way is vital, while appreciating the patient journey – and walking an extra mile in the patient’s shoes – has resulted in pharma companies delivering better results.
DL: We are seeing significant and growing interest from medical affairs teams in exploring meaningful engagement, from understanding the lived experience and identifying the unmet need, through to designing, interpreting and publishing data. In all of these areas, the true value of patient input is being constantly assessed, providing essential clarity on where patients can add real value and how pharma can best engage with them to make it happen.
AC: It is vital to embed patient input into all aspects of discovery, development and access. We have witnessed that ‘involved patients’ are more empowered, which is hugely beneficial for clinical trial recruitment and retention, HTA submissions and the development of in-market services. Patient involvement has also served to highlight potential variations in access to medicines and, as an industry, pharma must continue striving to ensure diverse patient integration at all stages.
GG: It is critical to gain insights from the patient at every stage of product development. Listening to the patient voice throughout the process enables better planning for commercialisation and health economics. It also enhances protocol optimisation, by assessing the patient burden upfront to avoid the need for amendments, and improving patient recruitment and retention, which has always been one of the biggest challenges in bringing treatments to market.
Digital vision – patients and pharma find their cyberspace
MS: The digital revolution is all about communication and making our lives more convenient. We continue to actively invest in new technologies that help improve the patient experience, including the use of e-consent, e-PROs and electronic media channels. Through improved communication and information-sharing pathways that are convenient for the patient, we also focus on promoting patient engagement right from the outset of the clinical development process.
EM: We are now meeting modern patient needs via mobile phones and applications. These tools, along with integrated AI technology, facilitate a trustworthy and personalised method of communicating with patients. Once you truly understand the individual, by collecting their opt-in information about a specific experience, you have the ability to share relevant data with each individual patient. Digital platforms are the conduit through which productive patient engagement and better outcomes can be achieved.
DL: With so much misleading material online, pharma is keen to provide patients with accurate, accessible data. Plain language summaries (PLS) of peer-reviewed journals or congress publications are a trusted way to provide quality information to patients. Subsequent sharing of these documents by publishers, authors and patient advocacy groups – using social media channels such as Twitter and platforms like FigShare – also help to disseminate important messages.
AC: The rise of ‘digital’ provides enormous opportunity to engage with patients at different stages of their disease. Digital technologies have played a significant role in our clinical trial recruitment and engagement to date, and will become fundamental in the progress of vital research in the post COVID-19 world. For clinicians, providing patients with access to digital information on their disease or treatment options could help drive much more informed discussions in the future.
GG: In the digital world, just as in life, one size doesn’t fit all and assessing the best ways of engaging the specific patient population is an important step in the development of a comprehensive patient recruitment and engagement plan. Factors that affect the choice of communication channels and approaches for engaging include the target population age profile, specific limiting factors in particular therapeutic areas and length of trial.
Success stories – the rise of pharma-patient collaborations
MS: O4 is successfully collaborating with patients through our study sites every day and this interaction is a source of constant motivation for our team. Prior to lockdown we held a series of patient focus groups across UK NHS centres, to better understand the patient experience and inform the specific study design. In addition to the practical benefits it provided, the experience was both empowering to patients and uplifting to our team.
EM: Belong.Life uses telehealth technology to bring the clinician and allied medical experts to the patient via a digital platform. The COVID-19 pandemic has brought to light the ease and improved treatment management that telehealth allows and we can expect this trend to continue its growth. With electronic health records becoming more available, these services will give patients access to a ‘treatment manager’, transferring many tasks from hospitals and clinics to patients themselves.
DL: Having identified a lack of guidance for developing good quality PLS, Envision collaborated with a range of key stakeholders, including patients, pharma representatives and publishers, to co-create an evidence-based toolkit. In particular, the patients highlighted the need to improve phonetics to empower them in conversations, provide a searchable repository to ensure easy access and clarify the stage of drug development as an indicator of relevance.
AC: In 2019, the Janssen Patient Advisory Committee launched, bringing together a dedicated group of patients who challenge us to ensure the patient voice is represented. The committee members have different backgrounds and conditions, but share the same passion to improve care. The Blood Cancer Dashboard – our collaboration with blood cancer charities and PHE – highlights the disparity in blood cancer diagnosis versus common cancers, further underlining the value of patient-centric partnerships.
GG: ICON’s global site network gives us access to patients who have already participated in clinical trials and can provide unique insights into otherwise overlooked areas. In one case we conducted a patient burden assessment for a women’s health study and this was successfully used to inform a more patient-focused design. Another involved a series of patient workshops attended by pregnant women with a rare infection, and listening to their perspectives on a vaccine and new clinical trial.
Game of life
The pharma-patient evolution has been an existential awakening of era-changing proportions. For pharma, the individuals whose lives they are motivated to change have gone from two dimensions to four – numbers have become real people.
Patients who, 15 years ago, may not even have known that a pharma industry exists, can now talk confidently about treatment options, trials, approvals and even NICE. This digitally driven meeting between pharma and patients, in what was once a barren ‘healthcare no man’s land’, has changed the game forever.
Patients are now partners in the charge towards hope, discovery and transformed lives. Meanwhile, as these relationships flourish and treatments emerge through honest collaboration, pharma has been unburdened by the regulation-cloaked, maniacally laughing caricature of the predigital age. Indeed, companies are now able to reveal their true identities and mainly, it seems, they are populated by very sound human beings. And when one group of humans and another group of humans get together with a common goal – the magic can really start to happen…
