Emma Sutcliffe (ES): Overwhelmingly, the many patients and patient groups we work with remind us that pharma companies need to adhere to the ‘BREATHE’ principles if they truly want to inhale life – real life scenarios into their patient engagement experiences. We worked with a cross section of patients – from leaders to the everyday mum trying to juggle family life – to agree a simple ‘checklist’.
It comes down to this: the ‘B’ is for boost. Patients want tips, interventions and interactions that help them live. ‘R’ is for real, as in the experience must be authentic, not a synthetic altruism; pharma companies must be confident that their products and services will work for patients. ‘E’ is for entertain. It is difficult, tiring and emotional trying to live with a chronic condition. Pharma companies shouldn’t be afraid of emoting with people and creating moments of sanctuary via sympathy and humour. ‘A’ is for action. Don’t inundate. Activate, let people contribute, share, donate and add their skills. ‘T’ is for trust. Let them know you as people with aspiration, as a pharma company where on every level people are proactive and articulate about their patient-centric ambitions. ‘H’ is for help. This means providing channels and technology that give practical solutions offering long-term dialogue with the patient. The final one is ‘E’ for earn; pharma has earned the right to be patient centric and in people’s lives. It is OK to be visible and let people know they have a right to be there.
Richard Evans (RE): If I look at an organisation that is properly patient centric, then it is going to have senior leadership with outstanding endorsement and commitment that is demonstrable. When we run training workshops, we insist everyone stands up and plays the game of ‘When did you last see a patient?’. There are few who sit down first in the ‘today’ category; there are too many who feel they can’t even talk to a patient. CEOs like Paul Perreault at CSL and Gitte Aabo at Leo are seeing patients regularly, which instils the importance of patient centricity across an entire organisation. A company must also be prepared to shine a light on itself – to be prepared to put working criteria in place to assess its patient centricity activities, from leadership and governance through activities and communications.
Fearless audits of patient centricity and benchmarking, in the sector and across sector, makes the intention to keep improving clear. We are rigorous in stating that companies should audit their approaches to patient centricity, so they can continually evolve and improve their approaches. Any patient engagement programme we co-create between pharma and patients should have internal alignment first, follow an agreed and inclusive process and clearly state outcomes for all parties.
ES: It is about providing an ‘ABC’ infrastructure: Accessing patients’ voices and needs, providing Behavioural change services beyond the pill and enhancing the Continuum of care. It is not just interacting with patients, it is being present with them – being central in their lives, not them being central to you.
ES: Pharma companies can over-promise, which runs the risk of appearing to offer a sugar-coated solution, rather than a meaningful one. Vast amounts of monitoring of health and outcomes are discussed, but pharma will only have better relationships with patients when it simply helps them to live better with a condition. Pharma companies need to see the person before they see the condition. We advocate that the first question pharma should ask itself is: ‘Patients live with their condition every day. Do you?’ How a company answers that will tell it what it needs to do.
RE: There is a person with a family and friends behind the data. The level of commitment made by patients is high; they will look for help and advice before, during and after treatments. Too often patients’ needs are just an afterthought. Pharma needs to provide support in a way that is accessible, appropriate and available.
The most frequent error that we see is the assumption is that becoming patient centric will be easy; but it’s not. The companies that are truly patient centric have a senior leadership commitment that runs all the way through the organisation.
ES: Kudos to Grunenthal [see Box 1]. Its approach is driven by R&D and the medical team, but it also runs right through to the commercial side of the business. They regularly meet with people living with pain, so that they can understand what everyday life is like for people. They have started talking to patients first, seeking out products and services to meet their needs. They ask, ‘What do you need?’ rather than saying ‘This is what you can have’.
RE: There are quite a lot of examples where companies have done a limited amount of activity. But everybody in the organisation should be asking what they are doing to help patients – every individual, from the accounts department through to R&D, through to commercial. They need to understand that the reason that they go to work is to help patients. If everybody understands that, that is when we know that organisations are patient centric.
ES: Ruth Wilson’s work with Teva Pharmaceuticals’ ‘My Day’ cancer support campaign is a good example [Box 2]. It is outstanding because it provides help, care and support for family members. It is supporting the patient network. That is an example of good quality patient support.
Merck [Box 3] has a great, personable and emotive interaction with patients; it uses patient language like ‘be curious’, rather than shrouding its communications in scientific secrecy, and it acknowledges how patient advocacy can keep a company focused on the disease and patient goal when a purely commercial decision may have led the organisation down a different path.
Another large company that does this is Johnson & Johnson. It is now in the business of disease prevention and that is its research focus. It wants to ensure that people are living healthier for longer, to the point where they need interventions, not treatment. The health companies that get patient centricity right go out of their way to understand what the patients’ needs are – and if it is not authentic then patients see through it. If patient groups don’t see any effect, they won’t engage. The companies that get it right are relentless.
RE: Some companies have a high level of maturity and understand what they need to do to properly engage with patients. They measure themselves and challenge themselves to do better. Other companies are less mature in their patient engagement. What we are doing is getting these companies to do it better than they are currently. Everybody can improve when it comes to patient centricity – and there are a lot of companies that can improve dramatically.
Emma Sutcliffe cites the example of Grunenthal, which proposed the possibility of creating an infrastructure of ‘patient-centred services’ in 2014. The idea was to have this run through all of the company’s divisions, from R&D to altruism. Senior managers met with consultants and leaders in patient engagement to give a ‘real-world’ perspective on patients’ needs. The company then conducted internal audits and meetings, resulting in meetings with early R&D leaders and to Lars Joensson’s appointment as vice president of patient engagement in 2016.
His vision involves early engagement with patients in R&D to improve patients’ lives, and a drive to establish best practice in patient-driven research, with the patient voice included at all stages. Joensson told the recent eyeforpharma conference that Grunenthal had developed disease-specific tools for measuring patient-reported outcomes that would help to shape future clinical trials.
Input from patients is already helping the company to modify phase 3 trial designs to produce outcome measures that are more meaningful to patients.
The feedback from patients is also helping to inform discussions with payers and health technology assessment bodies, which are increasingly asking for patient-relevant information in their decision making.
Joensson said the patient voice was helping to inform Grunenthal’s research into new treatments for pain, as different people feel pain in very different ways and there is no ‘gold standard’ clinical measure. Grunenthal researchers have drawn on feedback from patient advocates and clinicians at a special patient summit. As a result the company has formed three working groups which are helping to inform research into chronic pain.
Teva’s ‘My Day’ cancer support campaign uses a community-style platform to build and encourage patient engagement in the long term. The site gives recipes that can help with problems encountered with cancer treatment – such as carrot soup to help patients with diarrhoea, vomiting, or dry mouth. There is also information about issues such as recurrence, and discussion articles about how patients may feel when they have been diagnosed with cancer.
There are links to YouTube videos featuring interactive content about issues such as drawing up a survivorship plan and how it can manage and improve patients’ health. Ruth Wilson at Teva has been instrumental in driving an internal mindset shift to see people first and build transactional trust.
The Merck Group is celebrating 350 years of curiosity, expertise and experience. This new style of communication, that has shed complex science, manages to be emotive without being patronising. Merck Group promotes open innovation, inviting people to be an energetic part of its culture.
It encourages the big, life-changing ideas and the everyday things that we rely on to live in our best version of health. The desire to collaborate and co-create with patients resonates through every communication it makes and in the behaviour of its people.
Emma Sutcliffe is Director, Patient Engagement and Innovation, at NexGen Healthcare Communications. She is a global leader in patient engagement and her recent appointment as the first Chief Patient Officer at the industry ‘watchdog’, EyeforPharma, reflects her work with more than 20 pharma companies to build patient engagement programmes.
Now in her third decade as a Medical Writer, she is a Medical Biochemist and currently qualifying as a psychotherapist focused on helping patients adapt to life with a chronic condition. She has written the ‘Patient Polemic’ column about pharmaceutical science communication for more than five years.
She has an extensive network of relationships with patient groups and HCPs, and has worked with KOLs in all therapeutic areas.
Sutcliffe has received several awards for her leadership in pharmaceutical medical communications and was shortlisted as a global influencer in the industry for her work on the socialisation of health and patient engagement. She is the founder of the ‘BREATHE’ principles and ‘OxyGen’ process.
Richard Evans is Director and Co-Founder of NexGen Healthcare Communications. He is a global leader in healthcare communications and has a passion for improving the way the industry is communicating with patients and increasing openness with patients and patient groups.
His career has spanned 30 years in the industry and, after 25 years working for other people, he and two colleagues formed NexGen in late 2013 in order to do things slightly differently.
He draws inspiration and experience from a network of KOL, patient and institutional contacts.
He is a frequent contributor to conferences and panels and has a passion for helping the industry to change to tackle the many challenges it is facing in the next 10–20 years.