Analysis

Every Patient Voice Counts

Alison Dunlop

What role can Industry play in translating recent patient engagement strategies introduced by ABPI and NICE to ensure that ALL lived patient experiences are represented in decisions that shape the future of health and social care?

In the past two weeks, we’ve seen two important announcements that reflect a new landscape for the pharmaceutical industry – one that reimagines patient centric strategies.

The ABPI (Association of the British Pharmaceutical Industry) launched its new Patient Advisory Council, aimed at ensuring that meaningful patient engagement informs future strategy and policy priorities across the pharma industry. NICE (National Institute for Health and Care Excellence) also announced that, in response to a recent consultation to improve its health technology evaluation process, patients have been introduced for the first time to its Topic Selection Oversight Panel – with responsibility for determining the most appropriate guidance for development following selection.

These initiatives are just the starting point to change. The pandemic has fully highlighted the challenges related to health inequalities – part of the solution lies in placing the unique perspective of lived patient experiences at the heart of transforming healthcare brands at every stage of their lifecycle. Bringing more credible patient experiences to the decision-making process is fundamental to driving and shaping real change in health and social care.

But the reality is that patients who are already engaged with patient groups tend to represent a more motivated, health literate part of their community. Inevitably, they are more active about their condition and better understand how to access the right platforms to have their voices heard. So, we could be in danger of focusing brand strategies solely on the collective voices of engaged patients.

To what degree will these latest initiatives from NICE and the ABPI represent the needs of the broader patient population – the elderly, the more vulnerable, those in rural areas or those who are more socially disadvantaged? Often, patients with the poorest outcomes are those who really struggle to have their voices heard.

Industry has a critical role to play in supporting these and other patient engagement strategies to ensure that the voices we listen to go beyond the engaged patient. Those who are under-represented are more likely to benefit from engagement with Pharma and it will inevitably help to improve their outcomes.  As companies look to translate these latest strategies into the reality of day-to-day patient centric approaches, there are three core principles that can help ensure the voices they listen to are fully representative of the whole patient population.

Collaboration. Pharma and patient groups cannot provide effective solutions alone. Working in partnership will build a greater understanding of diverse patient communities, helping to deliver a more holistic approach to patient experiences and their outcomes. The impact of the pandemic has starkly highlighted the variation in access to healthcare and shown how this can result in health inequalities. Industry needs to continue to be part of the solution, providing much needed resource and innovation to help future proof services and address health inequalities across patient populations.

Innovative approaches will be key to reaching beyond those who are already engaging proactively with their condition – taking the ‘road less travelled’ is essential in identifying new approaches to understand the daily lives of the many, not just the educated, informed few.

Data and local knowledge. These insights are integral to identifying the demographic and geographical characteristics of patients experiencing the poorest outcomes. By sharing access to platforms such as national clinical data sets, Industry can provide patient groups with granular detail regarding disease specific patient populations and identify where resources need to be targeted to address health inequalities.

Access to real time data can also enable predictions regarding areas where patients are likely to experience behavioural and adherence challenges. In many cases, patient groups will require the support of industry in accessing the expertise of epidemiologists and statisticians to help understand and analyse the data in a meaningful way.

Local knowledge is essential to enhance data insights and better represent and engage the more vulnerable groups. We need to go beyond traditional routes, working in partnership with community ambassadors who can effectively champion and understand the daily lives of this important sector of the patient population. These ‘ambassadors’ are integral to developing engagement strategies that fully reflect the breadth of perspectives. This input is vital, not just in determining terminology and language, but also in participating in insight driven initiatives such as immersive research, clinical trials and patient panels. If we don’t find routes to broaden the patient base, then how can we expect the results to be fully representative of the patient community?

Digital engagement. Accelerated by the pandemic, we’ve seen industry and patient groups harness the full potential of digital engagement. Adopting digital tools to provide care and support solutions and connecting patients has led to improvements in meeting patient needs and better adherence. Health technology is transforming health systems to create more patient centric services that could ultimately enable a radical reshaping of the model of health and care delivery.

But, not all patients can engage on equal terms with digital services. Many of the more remote members of patient communities may struggle with – or may not have access to – technology. Remote consultations and engaging with digital care may be a real challenge for some patients.

So, while supporting access to digital services, it’s important to consider those who are socially and digitally disadvantaged. Digital engagement shouldn’t come at the cost of patient choice. This raises a crucial area where Industry can provide vital insight into the preferences that patients have for receiving and engaging with health information. This knowledge will support the NHS in tailoring its approach to meet the diversity of need, enabling patients to make an informed choice about their care. An effective patient engagement strategy involves providing all patients with choices, ensuring they do not feel disenfranchised from shared decision making simply because it involves a channel that they struggle to engage with.

As we move through the pandemic, these latest initiatives from NICE and ABPI reinforce the opportunity for pharma companies to work with patient groups as valued partners in creating equitable patient centric and sustainable healthcare systems. At the heart of this approach must be the real-life patient experiences, representing the perspective of the whole patient population. And with that will come a greater understanding of patient communities, changing the shape of integrated advocacy partnerships for the future.