The meaning of life is a difficult concept to pin down. It is riven by subjective judgement and is the ceaseless target of books, films, forests of greeting cards and fridge magnet philosophy.
Quality of life is a gold standard in healthcare but it is an equally elusive assay with enigmatic, multi-dimensional components that often confound formulae and equations.
Its study is an acronym-rich environment with the World Health Organization’s Quality of Life Assessment (WHOQOL) reaching into more than 20 separate measures to demonstrate the depths needed to provide tangible results.
Recognising and calibrating Quality of Life (QoL) has moved
from relative backwaters to the healthcare super highways, driven by the need to manage ageing populations living with co-morbidities and the opportunity presented by the vast array of monitoring technology.
More than three billion health apps have been downloaded globally but many observers question whether the pharmaceutical industry has harnessed the true potential of mobile health to improve patient outcomes and create more complete treatment packages that are attractive to payers struggling with the tissue-thin budgets.
Putting the patient at the heart of treatment is a long-cherished goal but creating monitoring systems that are reliable, responsive and generate relevant results is a complex task.
Craig Mills, group managing director of Frontera Group, the London-based group specialising in patient behaviour, believes industry may be missing a crucial factor… the human factor.
Golden age of opportunity “Of the 3.2 billion health apps downloaded each year to help and support those living with health challenges, only 0.2% of those came from pharma, with five apps responsible for more than 50% of that contribution,” Mills says. In addition, 85% of all health apps downloaded experience fewer than 5,000 installations. “Research tells us that a key issue is that most health apps are developed in isolation of patients. The most important thing to recognise here is that the people they sought to serve and influence are not part of the process – a huge irony given that more than 90% of patients want to play a more active role in decisions about their health. Pharma appears oblivious to the wealth of evidence demonstrating that increasing a patient’s activation measure (by increasing their knowledge and confidence) improves outcomes and therefore their life quality.
“We are already in a golden era of opportunity, but pharma has not necessarily embraced this yet because of its reluctance to believe in the consequences.”
But patient populations are unlikely to wait for pharma to connect with their healthcare.
“It is happening without pharma,” Mills adds. “If you look at HealthUnlocked (one of the world’s largest social networks connecting patients), it includes more than 700 different communities and has over 4.7 million unique visitors a month. Members communicating with their peers over a few months on the network show an increase in their activation measure.
“So, whether pharma is immersing itself in it enough or not, patients are getting on with it themselves and, because of that, their outcomes and QoL improve. That’s a really powerful thing.
“Patient activation measures are useful because they gauge a patient’s knowledge and ability to deal with health information along with their confidence to navigate consultations and conversations
with healthcare professionals (HCPs). People who take a bigger role in their health recover quicker and live longer.
“So, if life expectancy and health behaviour are directly correlated,
it should follow that if we can create an environment where people are more active within their health,
we can influence their health-related quality of life at a population level.”
The Quality of Life challenge also features a trust element with companies needing to reach into the populations of the digitally-suspicious and digitally-naïve who vastly outnumber those who make
their digital health a calling and happily wreathe themselves in wearables.
Scramble to record data
“We need patient engagement and activation before we even start to get to a point where we can measure patient QoL,” says Dennis O’Brien, CEO of Lucid, the medical education and communications group of companies. “We can try to collect data through the clinic or digital media all we like but if patients are not engaged with the disease and don’t understand the value of it then we will fail or end up with a particular subset of patients. Patient activation is the start point. “I would like us to be in a place where everyone would use simple watches and devices to collect data but at the moment we are confined to or skewed by a group of patients who are the most motivated. It’s good that we have that data but it is not measuring the true impact we have on the world.” But the scramble to record data and make it relevant could lead to patient overload with pharma companies, HCPs and patient associations clamouring for access to their data, he fears.
“We don’t want them to feel like they have to open yet another app – how many passwords do they already struggle to remember?” adds O’Brien. “The technological touch-points currently available are full of support and benefit yet disease apps tend to be too simplistic and brand- or disease-centric. Do we really believe our audience will open an app for every disease or condition they have? We have to get into the real world.
“If we are going to get patients to measure their QoL, and it is going to be reliable, we will need to engage bigger and better than ever before, otherwise we are going to get a small amount of data from a small amount of patients. To make that step-change in understanding patients and taking it to a next level of caring about their QoL, we need to make sure we engage at a higher level and that requires us to think about all patients and most importantly how they live their life, not just their condition and their experience with HCPs for a particular condition.
“We are competing with Instagram and Facebook so we have to get to a place where there is a real benefit that can be seen so they are encouraged to take an active role in their disease management.
“If it works, we will get better drug delivery, improved adherence, more committed patients and a reduction of waste. It is a big prize.” O’Brien sees benefit in collaborations between pharma companies and digital healthcare providers who have the potential to collect live and relevant data.
“If you look at Lloyds Bank, they are positioning themselves as being able to take care of much more of your life than a traditional bank can by being a holistic money management platform enabling you to manage bills, mortgages, insurance renewals, everything and it is an interesting and important concept for pharma to consider,” he adds. “There is no reason why pharma cannot build enough trust to run a holistic service that allows it to track and care for patients. Businesses like Babylon Health have managed to engage large numbers of patients; it’s not that the technology isn’t there, its about how we think we can add value.
“Pharma could look at acquiring digital technology so it can provide a more holistic level of care.”
Quality of life review
“Industry has to recognise that to be successful in measuring QoL, we have to provide engaging technology that adds value to patients in their lives, not just asks them to report how they feel.”Measuring QoL is infecting all areas of healthcare with NICE, the UK government’s healthcare regulators, in the middle of a two-year review of its Quality of Life Years (QALY) assessment that is applied to all new drugs entering the market. It wants to extend QoL metrics to social care.It states: “Some people feel that the existing measures of health-related quality of life might not capture important benefits of treatments beyond health-related quality of life, such as independence or improved relationships with friends, family and carers. At the same time, different measures are used in healthcare, social care and public health, making it difficult to compare across these sectors, which is important when thinking about the wider health and social care budget.”
The review, led by the School of Health and Related Research at the University of Sheffield, with collaborators from the University of Kent, the Office of Health Economics and the EuroQol Research Foundation, is conducting interviews and surveys with patients, social care users and the public to define the critical aspects of quality of life and how best to measure them.
In Finland, the government is releasing citizens’ well-being records to professionals and researchers to boost outcomes and energise the nation’s preventative health strategy. Its social affairs and health ministry permanent secretary Paivi Sillanaukee emphasised its commitment to digital by echoing the phrase: “Data is the new oil.”
Alex Brock, head of digital, Europe, at Syneos Health Communications, says: “Technology is really an enabler. But, for the most part, whatever metrics you assign won’t necessarily be fundamentally driven by technology. Rather, it vastly improves our ability to generate and track data so, once we define what we think is important, there are more ways to capture and analyse this data.”
Syneos Health, an integrated clinical and commercial biopharmaceutical solutions company, provided key insight earlier this year with a study that showed the vast majority of respondents felt doctors (56%), hospitals (44%) and the NHS (39%) should be responsible for providing artificial intelligence tools in healthcare – pharma companies trailed at 8%.
“The implication of course is that if pharma wants to be involved, partnership is the only way forward,” adds Brock. “To get to a genuinely effective understanding, you’re effectively asking a patient ‘what does QoL mean to you?’, which may result in a far more qualitative and unique set of experiential measures. But this is really where you have the potential to unlock better ways of providing care which hopefully translates into better outcomes.”
Open minds
Syneos is active in a number of projects tracking the impact of a variety of digital engagements and measurements of conditions to mine a deeper sense of patients than is provided by traditional research.
“The key insight we uncovered was the importance of tone. Being able to communicate with patients in a more informal, human way was proven to be preferable to the conventional, more serious/paternalistic pharma tone. I think there’s a potential shift, or opportunity, in terms of how QoL data is collected, which is potentially really exciting.”
It is clear that pharma will need an open mind and the capacity to incorporate a colourful palette of human behaviour nuances to measure and improve QoL generally and be prepared to get granular
to connect strongly with subsets and individuals.
Craig Mills, and others, are clear about the potential of digital measurement to improve QoL and the willingness of the public to adopt it with or without pharma’s involvement.
“Is industry missing a golden opportunity? In a sense we are but it will come when we can establish a belief in the consequences of integrating the patient story into the scientific narrative that seems to dominate the way pharma works,”
he says.
Dennis O’Brien concludes: “The companies that embrace technology and harness that technology to add value to patients will be the companies that win in ten years’ time.”
