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Six degrees of participation

Exploring the ongoing journey to patient empowerment and examining how pharma can play a part in more participatory models of care

Cog

The ongoing crescendo of the patient voice continues to reshape healthcare. A global evolution of technologies, expectations and behaviours is forcing providers, physicians and payers to rethink healthcare models and redefine patient communications. The implications for pharma are equally significant. From patient-centricity to patient engagement, empowerment and experience, the industry has become a factory for buzzwords that understandably focus on patients. But in Europe, pharma finds itself in an uncomfortable position: everyone is talking about patients yet talking to them is incredibly difficult. Somehow we must find a way. Patients are seeking to play a more active role in decisions about their care and, as communications channels present accessible opportunities for dialogue and information exchange, pharma needs to find a way into the conversation. The era of Participatory Medicine - aka collaborative care or shared decision-making - is upon us, and fittingly for pharma, it’s the taking part that counts.

So what’s Participatory Medicine? The Society for Participatory Medicine (SPM) defines it as a movement in which ‘networked patients shift from being mere passengers to responsible drivers of their health’. The movement, led by providers and patients, began over a decade ago and focuses on the development of advocacy, information and tools to empower patients. The rationale is underpinned by abundant research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment. It sounds like common sense. Yet the journey to participatory models is complex. Moreover, despite the continued rise of empowered patients, SPM concedes that its objectives frame ‘a view of medicine currently only embraced by a minority of patients and physicians’. If patients are to make the shift from passengers to drivers, pharma must find a seat on the bus. But how? Here, with the help of thought leaders in healthcare communications, we explore six degrees of participation that could embed pharma into the movement of collaborative care.

Degree #1: Improve healthcare communications

With the logic behind participatory medicine compelling, it’s clear that communications will play a key role in driving change. This is a natural area of strength for pharma. “It’s in everyone’s best interests that patients are more engaged and aware of the treatment options available to them - so that they can make better, more informed decisions,” says Caroline Howley, account director, GCI Health. “For pharma, the participatory medicine movement presents two opportunities to help. ‘Above brand’, there’s a valuable educational role industry could play in helping patients prepare for a clinical consultation; what do they want from a healthcare appointment? What information do they need? Which lifestyle factors should they share with their doctor to help determine the right treatment options? Understanding these factors upfront can lead to more productive, two-way patient/physician dialogue. Pharma can certainly provide tools and communications to support this. Secondly, from a branded perspective, companies could do more to help patients understand all their treatment options. In many disease areas patients can be overwhelmed by the options but often have little information or knowledge to guide their choice. There’s a great opportunity for pharma to provide digestible, understandable information about all treatments across a disease area - guiding them through the benefits and risks and allowing patients to consider how they fit with their lifestyle needs and aims. Industry is well-placed to provide resources to help patients think about the things that are important to them and that allow them to be more informed in decisions about their care.”

Degree #2: Understand all our audiences

It’s the best part of a decade since Andrew Lansley’s NHS reforms in the UK coined (or borrowed) the phrase ‘no decision about me, without me’. The notion is at the heart of participatory medicine and, in recent years, the concept of patient empowerment has scaled new heights to deliver it. This is evidenced by books like Eric Topol’s The Patient Will See You Now, which shows how patients are redefining ‘participation’ and doing remarkable things in the name of empowerment. There’s a widespread belief that this is the future of medicine but doubts remain as to whether it truly translates across the board.

“We hear some amazing, real-life stories of empowerment - but one wonders how many are applicable to the average person,” says Alex Brock, head of digital, Europe, Syneos Health Communications. “Is everyone going to be that engaged? Is it realistic to expect that everyone wants to participate? Perhaps not. In-depth analysis of patient attitudes and behaviours shows that while many patients are well-informed and have healthy attitudes towards their disease, they consciously want to limit their level of participation. For example, a Parkinson’s patient recently told me that although he understood the importance of ‘participating’, he didn’t want to spend any more time than necessary thinking about Parkinson’s. He’s happy to trust his neurologist to take the lead - and to be part of that process. Conversely, there are others who are completely disengaged. It’s arguably more important to engage these patients to try and nurture more positive behaviours. Participation means different things to different people. We must not miss these perspectives in the clamour for participatory medicine.”

Degree #3: Consider the full definition of participation

Clearly, active participation is not for everyone. Indeed the SPM applies its definition of participatory medicine to ‘networked’ and e-patients, meaning large numbers will fall outside of its remit. In fact, there’s also a much broader definition of participation itself - extending to include aspects that aren’t part of a clinical consultation but still have a crucial influence on care. Activities ranging from traditional research to social listening provide a different lens for participation that can be used to address issues such as adherence, the cost of care and patient satisfaction. “Recently we’ve spoken to large numbers of patients and nurses to get an in-depth understanding of why patients find adherence challenging - and establish what appropriate interventions might look like,” says Alex Brock. “A key learning has been the importance of simplicity and tone; the interventions that work best to deliver information and support in a human way. As we’ve established, not all patients want to ‘participate’. But by meeting them halfway - and developing tools that speak their language - we can reduce the barriers to non-adherence. Similarly, social listening is a great way of understanding the patient lexicon. For example, unanswered questions posed by a patient are a good proxy for unmet needs. People participating in their health via social media can benefit a broader population who may not be participating - by helping inform needs, content and messaging. Participation is a broad church.”

Degree #4: Address the HCP skills gap

Although there are numerous ways of reaching the patient and varying degrees of participation, clinical consultation is perhaps the most influential arena for patient engagement. HCP/patient interaction is where the rubber hits the road. It’s here where the collaborative care movement really needs to make its mark. “For ‘participatory medicine’ to work there needs to be an acceptance from patients and doctors that they each play a role in the decision-making process,” says Caroline Howley. “There’s work to be done on both sides to establish the value of shared decision-making. In particular, there’s a well-established skills gap in how doctors engage patients that has arguably proved a barrier to more collaborative clinical consultations. Pharma can do more to help upskill doctors so they can have effective two-way conversations with patients that support shared decision-making.”

Dennis O’Brien, CEO, Lucid Group, agrees. “Pharma has been on a journey of trying to understand patients and has recognised that, at times, patients treat HCPs with a deference that stifles two-way dialogue,” he says. “While engagement with nurses is generally good, consultations with GPs and specialists can often be rushed - meaning patients don’t have the opportunity to discuss all the things that matter to them. But it’s not just a question of time - it’s sometimes down to a skills gap. Physicians commonly take a didactic approach to patient consultations and base treatment decisions on risk profiles rather than more collaborative discussion with the patient in front of them. It’s an area where pharma can help. In recent years, progressive pharma companies have run training programmes for HCPs to help improve their patient engagement with questioning techniques that empower patients. These are patient-centred, not brand-led, initiatives - and they can lead to more effective shared decision-making, better levels of care and stronger adherence. Everyone wins.”

Degree #5: Think broader than brand for the right to play

It’s no surprise that patient engagement has become a hot issue right at the top of pharma. Payers want it, patients want it and pharma wants it too. The question is: do providers actually want pharma to have a seat at the table or is the industry simply trying to muscle in on the conversation? “Evidence suggests there’s a real appetite for pharma to get involved - especially among patient advocacy groups who recognise the skills and knowledge the industry can offer,” says Richard Jones, managing director, The EarthWorks. “Likewise, payers know that patient empowerment is vital if they’re to deliver affordable and sustainable models of care. Moreover, they know that pharma can play an important role in the value exchange to help them get there. So there’s a will on all sides. However, if pharma is to demonstrate meaningful value, it needs to think beyond its brands. Patient-centred communications will come from focusing more broadly at the disease level and being prepared to think laterally about the solutions that are required to improve clinical outcomes. In a modern world, the most connective solutions will invariably have a digital DNA.”

Degree #6: Use data better - and collaborate

The industry has for many years used patient insights - built from market research of small numbers of patients - to persuade HCPs to change their clinical practice. It’s a familiar routine:
a pharma company presents data to an HCP that indicates patients aren’t happy. The HCP typically questions the robustness of the data and its relevance to local practice. The pharma company retreats, then returns with new insights and tries again. Securing behaviour change becomes a long, drawn-out affair. However, modern communications platforms - and the increased appetite for patients to participate in conversations around their care - has changed the game. “Pharma has the opportunity to progress from tailored insights to real-world, localised evidence,” says Dennis O’Brien. “Whether it’s through social listening, online forums or wearable technologies, we now have access to data sets that reveal patient satisfaction levels not just locally but right down to the individual. We can tell a GP in Hull that Joan in Stepney is not happy with her asthma care. That’s powerful evidence. And it’s right at our fingertips in most therapy areas. We need to maximise it. The smartest companies will be those that take advantage of new evidence-bases - fuelled by participatory patients - to develop partnerships with providers that improve care at the regional level. If we know that Joan and others are unhappy with asthma services in Hull, let’s collaborate to determine what we can do to help. Let’s show HCPs in Hull the evidence and work with them to create awareness and communications that help patients. That really would be true, patient-centred partnership.”

Collaboration and partnership will undoubtedly be key. Thankfully, it seems that pharma organisations are putting the building blocks in place to deliver on their promises of patient-centricity. “Pharma is increasingly investing more in patient engagement, with some companies appointing chief patient officers to act as internal champions,” says Richard Jones. “What’s more, as digital technology advances and the patient voice gets louder, there’s a growing belief that collaborative care can actually happen and genuine attempts to develop the digital tools to enable it. Encouragingly, there are real signs that the development of patient-centred innovations is becoming a multidisciplinary effort right across the healthcare ecosystem. For example, our recent work to design a patient and carer mobile application for PAH has benefited from ongoing collaboration with clinicians, patient advocacy groups and leading tertiary centres across the UK, as well as the Head of Digital and therapeutic heads from within the pharma client organisation. It’s a great example of collaboration, in keeping with the spirit of participatory medicine. Ultimately, however, this is a nascent industry for pharma. If companies truly want to engage patients and realise the potential of participatory medicine, they’ll need to adopt an iterative, minimal viable product approach and develop digital tools collaboratively and incrementally.”

The nth degree

The journey to patient empowerment will only continue - and it’s vital that pharma has a ticket to ride. But, as participatory models feature prominently on the roadmap, it’s important to remember that participation means different things to different people. It’s only through collaboration, innovation and iteration that the industry will develop interventions that truly empower patients to make the best decisions about their care. There are more than six degrees of participation. But the time to take part starts now.

Article by
Chris Ross

is a freelance writer  specialising in pharma and healthcare

29th March 2018

Article by
Chris Ross

is a freelance writer  specialising in pharma and healthcare

29th March 2018

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