|20th May 2020
Search the internet for “patient centricity” and “patient engagement”, and you’re faced with a plethora of different definitions. For me, as a patient advocate, it’s quite simple – patient centricity means putting patient needs at the heart of the work pharma does and how it operates. Patient engagement means involving patients in pharma’s work. It’s possible, but not ideal, to have one without the other.
For example, a company that engages with patients but is not patient-centric would run a patient focus group in a building that isn’t accessible for patients to attend. A company launching a patient support programme without consulting with patients during its development might be described as patient-centric even though there was no patient engagement.
It’s well known that pharma doesn’t have a great reputation among patient communities. “They don’t care about us,” “They only want to make money off us,” “It’s not profitable for pharma to find a cure,” are all comments that frequently appear in patient discussions.
Engaging with patients is a way of alleviating some of these concerns, not only by taking practical steps to ensure patient needs are being met, but also by encouraging patients to share their involvement with others.
The best way to achieve this is to engage with patient influencers and opinion leaders who are trusted members of their patient communities. If others see that they trust and believe in a company’s goals, ethos and activities, it can help to improve the company’s reputation overall.
Engaging with patients is more than a nice thing to do. It can make pharma’s work more relevant to their end customer. The possibilities encompass every stage of product and service development, from the design of clinical trials (including protocols and documentation) to post-marketing activities, education and awareness. It enables a firm to serve unmet patient needs, which can make it more competitive and can impact successful market authorisation.
One of the most important ways to engage patients is to enable them to share their story. Platforms such as Life Effects by Teva or MS One to One by Sanofi Genzyme, or unbranded disease awareness campaigns such as those listed on Once Daily Pharma’s website, offer patients the chance to share their experiences with the patient community and general public.
Patients are also essential for the development of content and information. This could include website content, patient information leaflets, study or clinical trial documentation, and clinical trial lay summaries.
The UK’s National Institute for Health Research (NIHR) Patient Engagement in Clinical Development service engages patients in protocol development to improve the design and delivery of commercial clinical research. Consequently, the clinical trials become more relevant and recruitment and retention improves.
Very often industry and clinicians lump patients together into a single group: ‘The Patients.’ For patient communities 30 or 40 years ago, this might have been OK. However, for patient engagement in the 21st century to be undertaken correctly, we need to acknowledge the changing patient landscape and what differentiates certain groups of patients from others. This, in turn, can determine how stakeholders should engage with them effectively and what activities to engage them in.
Working with individual patients is not the same as working with patient organisations. Patient organisations generally represent the voice of a patient community, but they also have their own aims and objectives, governance and messaging. Plus, someone representing a patient organisation may not have lived-in experience of the condition themselves.
Individual patients, by contrast, are more independent and can express their own views. Importantly, they have first-hand knowledge of living with a disease. There’s value in engaging with both, but they are not the same.
In my experience, there are three types of patients, with varying characteristics and levels of experience, skills, and knowledge. These include, the patient by experience, the expert patient and the pro patient.
First, the ‘patient by experience’. This patient knows about their own experience with their own condition. Their degree of education about their disease varies – they might be informed enough to manage their disease or they may not be informed at all and instead rely on following their doctor’s instructions. These patients are aware of issues affecting their own life and their condition, but do not necessarily know about other issues affecting their patient community. In my experience, most people are this type of patient, particularly when they’re newly diagnosed or have low levels of health literacy and/or education.
Next is the ’expert patient’. This patient is knowledgeable about their own experience, as well as the experiences and issues affecting the wider patient community. These patients tend to be well-informed, take an increasingly active role in their healthcare and are often involved in advocacy work, either independently or via patient organisations.
Finally, the ‘pro-patient’ is someone who looks beyond their own condition and knows about the common issues and systemic issues facing all patients. This can include health literacy, the drug development process, patient engagement, navigating the healthcare system, access to support and services, and digital health, among others. Pro-patients are highly knowledgeable, well connected with various stakeholders, and are usually equal partners in making their healthcare decisions. They can partner with pharmaceutical and life sciences organisations to offer useful insights on the broader patient community.
Because not every task is suited to every type of patient. A patient by experience, for example, would be more suited to providing insights into living with a condition than offering advice on the hot topics being discussed within the patient community.
It’s also important to consider the diversity of patients being engaged, as different ages, ethnicities, literacy or education levels, and disabilities must be represented during patient engagement activities.
Attracting and engaging with patients from diverse backgrounds is a challenge faced by many healthcare stakeholders. We need to continue exploring ways of ensuring good representation and that all patients are aware of the engagement opportunities that might exist. This is a particular area in which multi-stakeholder collaboration can help.
Any collaboration should benefit both parties, so it’s important to ask what patients want out of the process. This will partly depend on the type of patient they are, what they’re being engaged in and why they decide to participate. Patients want to feel valued and want to know they are helping their patient community. As a pro-patient, I also want to learn something from the engagement, be able to develop my skills, and foster change in the industry. I want to become a more informed and empowered patient so that I’m able to make better decisions about my own healthcare.
Although I’ve seen a shift towards more and better patient engagement during the past decade, it’s not yet an embedded part of business as usual at pharma companies. We’re getting there but we still have a way to go and helping companies understand why and how patients should be engaged is a step in the right direction.
|27th August 2020
Precision and personalised medicines are more than products, they are services in their own right. So, how should pharma approach this uncharted territory to ensure targeted therapies work for patients?