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A Declaration of Independent Living

Updated: Dec 16, 2019

Words by James Coker

With one in five people worldwide believed to be living with a form of disability, often as a consequence of disease, it is becoming increasingly inaccurate to label this group a minority. Creating new ways for these individuals to manage their disability outside of conventional health and social care structures is critical, both to improve the quality of life for patients and carers and to alleviate the increasing pressures on the healthcare sector. The recent growth of inventive solutions that enable disabled people to live more independently sets the scene for a discussion around the need for pharma to be marching their colours into this emerging battlefront.

Crucially, helping people with disabilities to live more independently could provide substantial relief to health systems globally. This is becoming an ever more influential aspect in pharma’s overall mission statement. Modern technologies now provide possibilities for care and support that were simply unimaginable in the past. “Disruptive innovation often happens when you have a big problem to solve”, explains Erik Nordkamp, General Manager UK and Cluster Lead Europe Pfizer, at Cannes Lions. “And the big problem to solve is that governments are running out of money to pay for healthcare, and we know this is only going to get worse. Demographics are only going one way, and at the same time we have an incredible wave of transformative technologies […] which are potential solutions to this problem.”

Empathy is the strongest force for considerable change

Aside from health systems, there is also the large and growing informal carer community to consider, many of whom spend much of their lives looking after disabled relatives. Therefore, developing solutions that enable more independent living has the benefit of alleviating the significant burden that is often placed on the shoulders of the growing army of carers worldwide. This is a key step in pharma transforming into a more patient and carer centric industry.

New technologies, such as artificial intelligence and augmented reality are already transforming the lives of disabled people dramatically. Yet, to date, there remains something of a gap in this market. “We know that accessibility benefits all, but we still think of it as something that will only help a minority. I really think that as a user, we all have the right to live in an inclusive world and we have the technology to make it possible”, comments Daniela Rubio, Digital Media Accessibility Consultant, who lives with blindness.

One pertinent example of an innovation that is having a transformative impact on the day-to-day lives of the disabled community comes from the company Aira. With AI and AR technology, blind or low vision people can use an app on their smartphone to livestream the view from their phone’s camera to a remotely based agent, who then describes the view to the listener, helping them conduct their day-to-day lives.

We know that accessibility benefits all, but we still think of it as something that will only help a minority

In one initiative, Aira has partnered with food stores to allow this service to be used free of charge. “We partnered with stores as we found most blind users don’t go alone to shop, they either ask someone else to go for them or ask family members to go with them”, explains Anirudh Koul, Head of AI and Research, Aira. “And stores have found that when they put this service in, 60–70% of their customers are people who have not been inside that store before”. This example highlights the potential societal and quality of life benefits of better accommodating this community.

New technology is not necessarily a pre-requisite to innovation in this area. TBWA Mumbai, for instance, have created the world’s first ever eye language in an initiative named ‘Blink to Speak’, allowing people who are paralysed and limited only to eye movement, such as amyotrophic lateral sclerosis patients, to communicate vital words or sentences. This demonstrates that the most important innovations in this area are those born out of the purest of motivations. “Empathy is the strongest force for considerable change”, comments Parixit Bhattacharya, Chief Creative Officer, TBWA. “It’s really your empathy that makes you do things that you would not do otherwise.”

If developing solutions to help disabled people have more independent and fulfilling lives were to become another of pharma’s crucial goals, the effect could be similar to that of a mid-table football team suddenly acquiring the services of Lionel Messi ahead of a new season. In recent years, pharma has shown increasing adeptness at developing innovative healthcare solutions, as well as collaborating with companies from other industries with individual inventions. Big pharma also has the financial muscle and know-how to pick great ideas and inventions off the ground and place them into the hands of people who need them.

Disability is hugely prevalent across the globe, and the numbers are set to rise in view of ageing societies, placing a large burden on health workers and informal carers alike. Pharma, alongside other healthcare stakeholders, can work to find ways to alleviate this pressure as well as enhance quality of life of this community; innovative solutions that allow disabled people to live more independently are already making big waves in this direction, opening up a new avenue in their pursuit of patient centricity.

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