For those of us who can remember the iconic Wolfie character played by Robert Lindsay in Citizen Smith, the phrase ‘Power to the People’ comes with memories of a lovable, beret-wearing rogue. In today’s changing pharma landscape, however, it’s worth considering what ‘Power to the People’ could really mean.
Patient power
Patient power is a growing phenomenon. Take a look at any of the pharmaceutical media today and it’s difficult to avoid phrases like patient centricity. Conferences are designed to share best practice around patient experience and there is a steady rise of individuals with roles that put patient engagement and advocacy at the heart of what they do.
Patient associations have rightly found an increasing voice and are being welcomed into the discussion; big data is helping to create patient archetypes, which in turn allow healthcare stakeholders to address some of the challenges of adherence, enriching understanding of how patients behave.
Indeed, ‘beyond the pill’ is rapidly becoming an established norm; it is what pharma can do to encourage people to take up the challenges of self-care and become active participants in their health and well-being.
Freedom from ‘suffering’
Sometime ago we started to move away from blunt descriptors that linked suffering with a given condition; no longer did we talk of osteoarthritis sufferers, instead we defined these populations as people living with osteoarthritis. Similarly, in cancer we less frequently hear phrases like terminal cancer, instead we refer to people living with cancer and cancer survivors.
In part, these subtle language shifts signalled that the era of self-care was beginning, with an empowered population ready to take up the challenges, with increasing responsibility for directing what they wanted out of healthcare.
Today, however, self care has not reached its full potential and the challenges of adherence continue to illustrate that there is much progress to be made on the journey. So what are some of the challenges that remain?
1. Illness is taboo:
Illnesses are often taboo and/or heavily stigmatised because they are related to what might be seen as unacceptable behaviour (eg HIV) or mental illness (eg a psychosis). However, on some level, every illness carries a degree of stigma. It isn’t fun to be ill. We are reluctant to complain about pain and adversity and health can be pushed under the carpet, especially if the disease is degenerative or ultimately fatal. This often leads to repressed thoughts about symptoms, avoiding displaying medication and talking about bad news. Society values stoicism.
Conversely, information seeking is generally regarded as a good thing in pharma and it follows that surely it must be good for people to have as much information as possible about their condition. However, in reality, information is only appreciated if it is welcome, appropriate and timely.
Almost everyone diagnosed with cancer in the first consultation shuts down in shock. The journey that they are undertaking at that moment in time is not one of hope and treatment realities, but one of fear and ultimately mortality risk. This doesn’t mean that there aren’t vital conversations that need to be had – but simply they take time to unfold. This situation is complicated further when we look at the pressure on consultation times.
2. People vs patients:
It’s tempting to constantly refer to patients. However, many of the most difficult to reach, and those who may be the most challenging to treat, simply may not want to be included in a ‘patient pool’. The poor compliers, the deniers, the doubters etc have other drivers. In developing patient clusters, we may already be distorting reality. In contrast, understanding more about the person and their life offers real benefits. Individualism is difficult in an environment of globalisation, but actually reaps major rewards in the context of care.
3. Recruitment vs interruption:
There are many reasons why it is best to meet unwell people where they are. This may literally mean going to their homes or contacting them online rather than dragging them to a viewing facility. Equally, it is clear that the reluctance of some to recognise themselves as ill may mean that they fall out of the HCP monitoring system for a significant part of their journey. Even for the most engaged, how the condition impacts on their lives and what they are prepared to tolerate changes over time and with exposure to other sources of influence.
4. Opportunities to engage:
Engagement is a continuum, requiring many ‘awakening’ moments with multiple interventions. Focusing on ‘awakening’ moments is the challenge of recruitment vs retention but ultimately in an environment of non-compliance, substantively amplifying outreach will reap rewards.
5. Information vs motivation:
There is a huge difference between providing information vs motivation. Just because people understand, it doesn’t mean they want to engage or follow instructions. For every condition with a positive story, there is almost always a negative. And with negativity comes ‘it could be me’ thinking. Somehow we rarely think we’ll win the lottery at a 300 to 1 chance, but ask a pregnant woman on the odds of Down’s Syndrome at 300 to 1 and it feels very close.
6. Big data:
While we can seek comfort from big data and clustering behaviours, we must not forget the individual. The true value of treatment to a person and their family often goes beyond simply lifting the symptoms and clinical burden. It brings a sense of emotional well-being, renewed engagement with life and friends, and even financial benefit. So how can pharma understand and evaluate this?
7. Small changes:
In many people the smaller changes may actually be more important. While the medical profession may have set criteria for how it defines a patient’s progress, this may never align with what an individual regards as success. And that can be a difficult concept to grasp. People’s expectations and their hopes for health improvements are highly individualised. To encourage self-care we really need to understand where health fits in the hierarchy of the needs of individuals. In reality, we may have to work hard to elevate how they engage with health personally before we can reach out to them within terms of self-care.
8. Learning from others:
While pharma is guided by regulations, there are enormous lessons that can be drawn from sectors outside health. We talk about adherence but the challenge within the charitable sector around recruiting members and keeping them actively involved – and donating – in campaigns has interesting parallels. It may not be a conversation around compliance, but what if we stopped talking in this manner? What can we learn from charities and their recruitment policies? Our activation in this area, and the ‘giving experience’ has fundamentally changed how we think about keeping people close.
Ultimately, anything that puts the person at the centre of their care has to be the future of healthcare. Without individual accountability, there isn’t a country in the world that can afford the rising costs of care. However, in thinking patients first – not people – we may be missing an opportunity to ignite the self-care revolution.