For pharmaceutical companies and other healthcare stakeholders, it is imperative that they understand how patient experience and input needs to be captured, contextualised, and applied to the process of medicine innovation, from research through to provider education and communication, including point of care.
They need to be leading efforts to ensure data and information is made accessible to a lay audience and the end user to promote responsible education and decision-making around the use of their innovation to complement and strengthen their efforts to engage the clinical audience they have more traditionally targeted.
The emphasis on patient-centric medicine development, where the patient and caregiver voice is increasingly included, recognised, and valued in shaping research, clinical trials, and treatment innovation, has been shown to improve both patient and business outcomes. The rise of engaged and empowered patients has the potential to accelerate the development of safer, more personalised, and effective therapies and improve the overall quality of healthcare.
The concept is also marking a significant shift in the provider–patient relationship. An empowered patient actively participates in their healthcare decisions, seeks to gain a deeper understanding of their health and treatment options, and demonstrates a greater investment in the management of their condition and health. By leveraging technology, patients have greater access to information, control over their health data, and the ability to connect with healthcare providers and peers through a diversity of channels. This leads to a more engaged and informed patient population, fostering a culture of patient empowerment in healthcare.
Patient empowerment, as defined by the World Health Organization, is “a process through which people gain greater control over decisions and actions affecting their health.” Key to this is the patient’s understanding of their role in the management of their health, the need for adequate knowledge enabling engagement with the healthcare provider, and a facilitating environment. Effective patient empowerment is, above all, enablement; patients and caregivers have the right to be informed, motivated, and included, not just at the point of care, but across all research activities and medicine development.
Healthcare providers are increasingly recognising the importance of involving patients in shared decision-making – tailoring treatment plans to individual preferences and needs, driven in part by an evolution of the consultation model and the increased accessibility of health information and data. An Ipsos Reid survey of over 3,000 clinicians in 2022 described how the dynamics of the decision-making structure are likely to evolve significantly in favour of the patient.
The empowered patient should not be viewed as a challenge to the traditional doctor-centric model, but as an opportunity for improved healthcare outcomes. Better-informed patients can have a profound impact on point-of-care decisions in healthcare, based on better-shared decision-making, increased adherence, reduced risk of medication errors and adverse events, better self-advocacy and data sharing, the potential for more efficient resource allocation, earlier intervention when issues arise, and more personalised care.
Incorporating elements of consumer behaviour is key for healthcare stakeholders to understand what drives patient decision-making and to develop strategies to support this.
Other industries, like banking, have responded quickly to address issues of value, convenience, and data interoperability, driven by an acceptance that the consumer experience is critical to adoption of change and innovation. This gives the end user greater control and access to tools and information that support their independence and decision-making abilities.
Understanding the patient experience is crucial for supporting healthcare decision-making for compelling reasons. Clinical studies and data remain the bedrock for determining standards of care and development of robust management strategies. However, to provide care that meets patients’ needs and preferences, it’s essential to also understand their preferences, values, and expectations.
The opportunity to enhance patient care by understanding their individual experiences and priorities is obvious. So, how much stronger could this approach be if, throughout the medicine development process, treatment options and communications were also informed by collective patient experience? In other words, the more the patient and caregiver experience is built into research, treatment development, and data communication, the greater the chances that the care will support and enhance individual patient decisions and needs.
The process of incorporating patient experience needs to be addressed as a systematic approach and should ensure the involvement of multiple stakeholders, including healthcare providers, to be optimally efficient and effective.
Embedding patient experience into medicine development and point of care has significant benefits:
To support better understanding of the patient experience, Lumanity developed a Patient Pathway tool. Using patient-directed digital tools, the Pathway can unlock insights into the patient journey and decision-making. It is an intuitive, patient-centric digital tool that maps the patient and caregiver lived experiences with a disease or condition over time. A deeper understanding of the lived patient experience helps to better inform engagement plans, commercialisation decisions, and improve health outcomes.
The Pathway tool allows researchers to discover and track when and why patients interact with various types of healthcare professionals. Mapping the patient flow, time to diagnosis, and frequency of visits can determine leverage points and identify opportunities for education and shared decision-making.
While better-informed patients can positively impact research and point-of-care decisions, it is essential that healthcare providers are prepared to engage with and support these patients effectively. Developing scientific messaging and engagement for healthcare professionals that considers the patient experience is essential for better education, improving trust and communication, enhancing collaboration, and ultimately achieving better healthcare outcomes. It ensures consistency of messaging and lexicon, relevance of data, and alignment of treatment objectives.
It makes perfect sense, therefore, from a commercial and outcome-driven perspective to consider the patient narrative at the same time that scientific messaging is being developed to support clinical decisions. It is counter-productive, to the point of wastefulness of resources, budget, and strategic opportunity, for companies to be developing patient and healthcare engagement programmes in isolation.
The decision to initiate a treatment and to further persevere and thrive, relies on a series of conversations between the end user and their healthcare provider, in which both partners are starting from an informed position and aligned to common objectives for care.
Developing an evidence-based patient narrative alongside the development of scientific messaging is not just common sense – it’s a strategic imperative. In both cases, the messaging should ideally integrate patient experience and preference data to support clinical datasets.
Synchronising the patient and scientific discourse facilitates a commitment to more personalised, data-driven healthcare to improve the provider–patient dialogue.
In our quest for a more patient-centred approach to healthcare, where the patient experience and input are integrated into research, treatment options, and data communication, the goal remains to improve personalisation and healthcare outcomes, enhance the provider–patient dialogue, and foster a culture of patient empowerment.
Fundamentally, in the context of medicine development and healthcare, let us remember that patients are not just recipients of care; they need to be the heartbeat of our programmes, the authors of our innovations, and the purpose that drives our progress.
Behind every clinical trial, every treatment, and every healthcare decision, there is a patient voice and lived experience. We must listen to this, apply it to all stakeholder engagement, and accept it as the currency that will support better personal and business outcomes.
Susan Daniels – VP, patient strategy and engagement, Lumanity Communications
A licensed pharmacist, Susan has over 25 years’ experience in healthcare delivery, the pharmaceutical industry, and medical communications. As VP of patient strategy and engagement for Lumanity Communications, Susan is responsible for the strategic and tactical development of patient-directed programmes to support patient engagement and advocacy in the medicines development initiatives of client partners in the pharmaceutical and biopharmaceutical industry. She is a member of the Lumanity Patient Centre of Excellence and leads the Lumanity Expert Patient Council. She is currently enrolled in a Master’s in International Patient Advocacy programme in partnership with the European Patients Forum (EPF). As a blood cancer survivor and advocate, she serves on the Board of Trustees for Lymphoma Action UK.
Lumanity applies incisive thinking and decisive action to cut through complex situations and deliver transformative outcomes to accelerate and optimise access to medical advances. With deep experience in medical, commercial, and regulatory affairs, Lumanity transforms data and information into real world insights and evidence that powers successful commercialisation and empowers patients, providers, payers, and regulators to take timely and decisive action.