The empowered patient is on the rise. The internet is a goldmine of health information, patient stories and experiences are shared on social media, and patients are seeking to be treated as partners when it comes to decisions about their healthcare.
“The patient voice is more powerful,” says Isabelle Bocher Pianka, chief patient affairs officer at Ipsen, noting the rise of the patient voice in the fast-changing healthcare environment. “We’re preparing ourselves for the challenge of tomorrow because the patient voice is becoming louder and, it’s clear the industry will need to include this dimension into its entire value chain.”
Being patient centric has been a sentiment that has been discussed by pharma for years. According to Nicola Walsby, managing director, PR, at Syneos Health Communications, the vast majority of pharma has the pillar of being patient-focused but fall short of being truly patient centric, where the patient is the customer rather than the healthcare professional (HCP). “The democratisation of information means patients are more informed than ever before so to treat patients as passive recipients doesn’t align with what consumers experience with other brands,” Walsby says. “Being patient centric will become increasingly important for companies. I want to see pharma walk the talk and live and breathe patient centricity.”
But whittling down the nuts and bolts of patient centricity is complex. According to Walsby, being patient centric means putting the patient at the centre as the core customer and making business decisions based on the patient as that core customer by understanding their needs and requirements. “Pharma is very good at doing this for HCPs but we don’t do that from a patient point-of-view,” she says. “We need to understand what that customer needs and wants from us but there is currently a lack of resonance and relevance because we assume we know what they want rather than really understanding it.”
Kathy Redmond, director of Havas SO’s patient engagement offering SO Patient, explains: “A commitment to patient centricity implies that a company engages with patients at regular points during the medicines lifecycle in order to understand their needs and preferences and then take these into consideration when making decisions that impact on drug development and access or the development of ‘beyond the pill’ services and resources.” Such engagement and patient insight will influence, for instance, where trials will take place, how medicines are priced, and how patient materials are developed, she says.
“Adopting a patient centric approach means a total overhaul of how different functions operate and this can only happen through effective engagement with patients and their families,” Redmond says. “This requires a change of culture where the primary focus becomes what’s important for patients and families rather than the business and health professionals.”
This transformational shift is important for pharma on many levels. Firstly, there is the impact on pharma’s reputation – improved transparency and trustworthiness, with companies seen to be working for the benefit of patients rather than the company’s own back pockets. Furthermore, as Redmond notes, being patient centric could also benefit the company by attracting talented individuals who buy-in to the company’s patient-centric mission and are keen to make a difference for patients.
Being patient centric is also fundamentally important for improving outcomes and the value of products, which is not insignificant in light of recent market access barriers. That’s because securing patient insights redefines product value from a patient perspective, which could be anything from symptom management to disease cure. “Having patients as active participants in this can help see what the clear value is for them and make sure they get the right product at the right time. That will result in an outcome that is more impactful and beneficial for the patient,” Walsby says.
Perhaps, most significant for the industry, is that patients want to be empowered more and they are increasingly expecting pharma to be patient centric. As such, pharma doesn’t really have a choice. “Patient centricity is here and it’s here to stay,” says Anita Osborn, clinical services director, Ashfield, part of UDG Healthcare plc. “This is not just a flash in the pan. This is something that is really part of a larger movement within healthcare, which is about not only empowering patients, and giving them a voice, but also a real focus on improving patient outcomes.”
But, as Walsby notes, being truly patient centric is uncharted territory. While many companies make claims, and some have even introduced an approach of sorts, the patchy and varied application of patient centricity across the industry is still just tickling the edges. Indeed, notes Redmond, “there is still a lot of scepticism within industry about the value of patient centricity”.
Although from a patient perspective, patient centredness within the industry has improved according to Patient View’s 2017 corporate reputation survey – where 35 percent of patient groups in 2017 believed the industry was ‘excellent’ or ‘good’ at being patient centric compared with just 26 percent in 2016. But more work is needed, Redmond says. “Patient advocates are becoming increasingly impatient and starting to call companies to account for the lip service they are paying to patient centricity.”
The reluctance to move in this direction has taken on many forms from fear of non-compliance and adverse event reporting to just not knowing what to do or how to excel at being patient centric. Osborn adds that many companies seem to struggle to take the next step and put strategies in place to enhance engagement, especially when there are so many stakeholders, both internally and externally.
In addition, there is a massive gap perceived by the industry that doesn’t seem to align patient centricity with a boom on sales, Walsby adds. Redmond agrees. “One of the key reasons that industry has been slow to embrace a patient centric approach is the overall lack of clarity about the strategic importance of patient centricity to a company and the lack of key performance indicators to clearly show a return on investment of being patient centric.”
Redmond gives the example of engaging with patients in drug development, which, she says, many companies are hesitant with because they think it will take too much time and will slow the development process down. But this isn’t actually the case. “A recent study by Levitan et al has suggested that patient engagement activities in clinical trials has the money-saving potential of avoiding protocol amendments and improves trial enrolment and retention,” Redmond says.
Novo Nordisk is one company taking this approach, establishing a Disease Experience Expert Panel (DEEP), which is consulted on when any new devices or products are developed to get rich insight into what the customer needs, Walsby says.
Ipsen is another company, tapping into the patient’s perspective during clinical development. By gleaning patient insight, the company learnt that while patients are often keen to join trials there are, for example, issues with transportation and getting to the clinical trial centres, which are often long distances away. “That is a burden for patients,” says Ipsen’s Bocher-Pianka. “We wouldn’t have known this without listening to patients.” The company is embedding patient centricity into the entire company, from R&D to post-commersialisation, with the Medical Affairs department in the lead, to identify unmet medical needs and deliver outcomes that genuinely improve patients’ lives from their perspective.
They have also discovered by listening to patients that they wanted to know the results of clinical studies, so Ipsen set about making the results available for patients in their own language.
“When we listened to patients we heard a lot of unmet needs,” Bocher-Pianka says. “For instance, they told us that it took seven to eight years before being diagnosed with a neuroendocrine tumour and being referred to an endocrinologist.” Ipsen decided to tackle the issue together with the patients and the doctors, learning that it was easy to get lost in the general information on ‘Dr Google’ based on their mix of non-specific symptoms. “The patients told us we should aggregate the symptoms, which would raise disease awareness and enable earlier diagnosis. They also emphasised the need to develop information for patients on living with their disease. We took all these insights and over two years we co-developed the Living with Nets website,” Bocher-Pianka says. This programme was named the Most Valuable Patient Initiative at the eyeforpharma 2018 European Awards.
“Executing patient centricity through concrete projects co-developed with patients is important for bringing value and improving the outcomes for patients based on their perspective of what the outcomes are,” Bocher-Pianka asserts, but notes patient centricity has been a journey. The firm had to see it as a top-down, bottom-up approach for it to work. “It has also required creating guidance built from the start with our colleagues from Ethics & Compliance and Legal for employees on how to interact with patient groups, as well as training the medical affairs department to anchor the approach and embed it progressively in the daily operational work. The challenge is to accept that this approach takes time because it is both a cultural and a ‘way we work’ change,” Bocher-Pianka says. “But it all starts with listening to patients.”
Embracing patient centricity might be a challenge, but Osborn notes that patients are better informed than ever before and, indeed, the concept will evolve as the development and introduction of technology, including wearables and other connected devices, continues apace. Another step forward is a much better understanding of how health psychology principles can be embedded into support programmes to help patients adopt positive thinking and behaviours. She says patient-led innovation as a result of these advances is putting pressure on pharma to take-up the patient-centric mantle, but she believes there is a “real and authentic move on the part of industry” to embrace it.
To do patient centricity well is important. Patient expectations are high; a company’s reputation and competitive edge is at stake, Redmond says. “In the future a patient centric mindset will be a must rather than a nice to have. The most patient centric companies will have a better reputation, be more trusted by patients and society as a whole, understand the benefits of their products from a patient perspective, be innovative in their approach to drug development and will excel in the development of services beyond the medicine,” Redmond says. Ultimately that will translate into huge benefits for companies and patients alike.
Experts’ top tips
- Define why the company wants to be patient centric, what it means to you and what value it will add to the business (saying competitors are doing it isn’t enough)
- Start listening to patients and understanding their needs – ask them what they think about your ideas, products and services
- Be ready to have your preconceived ideas challenged
- Ensure senior leadership is onboard
- Seek out early adopters in your company that embrace the concept and have them as champions to support this throughout the organisation
- Share the patient insights throughout the organisation
- Measuring the success of patient centricity will be a challenge but define the goals – i.e. a small number of easy to measure KPIs – early on and expect it to take time before you know whether the approach has been effective
- Ring fence sufficient funds for patient engagement
- Focus on low-hanging fruit initially and use short-term wins to create momentum.
Katrina Megget is a freelance journalist specialising in the pharmaceutical industry
