Words by Isabel O'Brien
Interview with Trishna Bharadia, MS Society Ambassador and Patient Engagement
Consultant, and Laurence Woollard, Haemophilia and Rare Disease Patient Thought Leader
The pharmaceutical industry views itself as increasingly patient centric, but do two patient advocates agree? In this roundtable discussion, they consider what the industry is doing well, and their views on how it could improve further
It is a fact of life that each of us will be a patient one day, but only a select number will undertake the important role of patient advocate. Motivated by a desire to improve the experience and prospects for those with a particular disease, patient advocates are a fountain of knowledge from which pharma can drink, but are companies filling their glasses to the brim?
Here, two passionate patient advocates, Laurence Woollard, Rare Disease Patient Thought Leader and Ambassador for the rare blood disorder haemophilia, and Patient Engagement Consultant Trishna Bharadia, who advocates for the currently incurable multiple sclerosis as an MS Society Ambassador, share their unique perspectives on patient centricity in the pharma industry.
What does the term ‘patient centric’ mean to you?
Woollard: The notion of ‘patient centricity’ is a fundamental principle in the delivery of care and one to be embraced. Yet, there remains considerable variability in understanding how such an abstract concept might be implemented in practice. To me, it acts as a social gauge for listening to and partnering with patients, whereby their individual preferences, values, beliefs and overall wellbeing are placed at the core of all initiatives, leading to a demonstrable impact on improved patient outcomes. Underpinning this process should be a value framework that comprises of openness, authenticity, compassion, empathy, kindness and respect. Acknowledgment of someone else’s situation can shift the dynamics of the patient-provider relationship to achieve the best outcomes for the person and their family.
Bharadia: I prefer the term ‘patient centredness’ because by saying ‘patient centric’ there is a tendency to put the patient as a stakeholder at the centre of everything, which isn’t what I think we should be aiming for. We need to be putting patient needs at the centre, and the patient voice should have an equal seat at the table along with other stakeholders. And by patient voice I mean patients, caregivers, patient advocates and patient groups. In my experience, this has been happening in pockets, but hasn’t yet spread throughout companies in their processes, or in the mindset of everyone working in industry. I still see examples of projects where the patient voice should clearly have been incorporated but it hasn’t been, or where the patient voice is considered as a resource that should be tapped into as needed rather than as a true partner in any given project or initiative.
Stop thinking of healthcare professionals as the end customer and understand that it’s actually the patients
How does a treatment or activity that considers the patient perspective differ to one that doesn’t?
Woollard: It is important to remember that like ecological systems – where networks of creatures interact with one another and their environment – within healthcare everything is connected. The idea of a shared value ecosystem is inspired by nature itself. Shared value connects and benefits all the parts of the whole: physicians, nurses, hospitals, pharmacies, healthcare providers, patients and even the broader society. Therefore, overlooking the perspective of the end user of a product or service will inevitably lead to a disparity in outcomes for multiple stakeholders as part of that shared value chain, while the product’s lifecycle and utility will be short lived.
Bharadia: Solutions that consider the patient perspective are more likely to be successful, better targeted, more relevant and appropriate. There’s research available to show that drugs developed in patient-centric clinical trials are more likely to launch and be adopted by payers, plus the trials are faster to recruit for. There are various examples of treatments and activities being developed that haven’t hit the mark with the patient community because nobody asked them, or they were asked too late for anything to be changed. In other industries, it’s second nature to ask the end user before something is designed. This needs to become second nature in the pharma industry. A first step would be to stop thinking of healthcare professionals as the end customer and understand that it’s actually the patients.
How effectively do you think pharma companies translate patient insights into action and change?
Woollard: This is dependent on several interrelated factors, with the intention of creating a better overall care experience for patients and their caregivers, whether that is by improving the diagnostic or treatment pathway, making the administration of a treatment more convenient, redesigning clinical trial protocols or identifying the endpoints that matter most. For pharma partners to truly harness the power of the patient voice, this requires a change in mindset inside the organisation around its patient engagement cultures and practices. Some companies have adopted a ‘Chief Patient Officer’ (i.e. a top-down approach), while others have assembled cross-functional teams with dedicated individuals within each function (i.e. bottom-up). Either way, patient-centric behaviours should be incorporated into all functions and adopted at all levels of the company if the intention is to truly achieve an enterprise-wide approach to patient centricity and deliver shared value across the entire ecosystem.
Bharadia: On an individual project basis, I think pharma companies are starting to do well in this. However, on company-wide and industry levels, things are still slow to change. I am still having conversations with organisations about how some of their processes aren’t conducive for a good patient partnership experience. These companies need to be looking to the ones that have implemented change. There are several I work with, for example, that have reduced their reimbursement time for patients, because the standard 60 or 90 days is just too long. Some companies are also now setting up standing patient advisory councils to ensure that there’s oversight of all their work, which is a move towards holding companies accountable if insights aren’t being acted upon. But there are still areas in which change has been slow to happen. Not seeing all patients as ‘the same’ when it comes to contracting and compensation, for instance. There’s been a vast amount of work done on this by organisations like Patient Focused Medicines Development, yet it’s taking years for some companies to implement the change.
Patient-centric behaviours should be incorporated into all functions and adopted at all levels of the company
How would you like to see pharma companies engaging with patients in the future?
Woollard: I am not naïve to the fact that companies face their own barriers in striving for a more patient-centric approach. That said, it should not be an excuse to stick with the status quo either. In an industry that places so much emphasis on traditional ROI metrics, patient centricity can be hard to quantify. Therefore, companies must look beyond short-term measures and accept that the monetary value from their investment in patient-centric transformation today might not be seen for a long time.
In the immediate future, I would like to see companies and patient advocacy groups take more accountability for the sponsorship of educational activities and programmes. This includes the better linking of outputs and outcomes to know whether the intervention has made a change to patients’ lives. If not already, companies should also look to commission an impact report to look at the effects of programme investment, together with sponsoring an open-access, peer-reviewed journal article on the programme’s results for international critique and sharing of best practice.
Bharadia: Patients need to be long-term partners with pharma companies, not merely engaged for specific insights at specific time points. True co-creation means partnering with the right types of patients for any particular activity from the very start in a transparent, fair and equitable way. So, don’t just hold a patient focus group to elicit insights into a patient journey, have a patient advocate on the project team to help shape the discussions, advise on logistics, help to facilitate the focus group and contextualise the findings.
I would also like to see pharma championing the issues affecting advocates within the advocacy space, such as fair payments, end-to-end involvement and equitable engagement. One example would be in the conference and congress space where patients aren’t being reimbursed for their time to speak or are being charged unreasonable amounts to attend. Industry should be considering whether they should be sponsoring or even attending these kinds of events and advocating for change with the organisers. It’s not just up to the patients to push for change – it needs to be coming from everyone.
This article features in GOLD 22 – read the full issue here.