Today is the 12th International Rare Disease Day, and this year’s theme is ‘Bridging health and social care.’ To mark the occasion, we talk about the value of online communities in providing a social service for people living with rare diseases.
Rare diseases affect a very small percentage of the population – defined in Europe when a disease or disorder affects fewer than 1 in 2,000 people, and in the U.S. when fewer than 200,000 Americans are affected at any given time – and therefore are often not widely-discussed in the public domain. Indeed, people diagnosed with a rare disease may have never heard of their condition prior to receiving a diagnosis. This lack of awareness can lead to people diagnosed with rare diseases feeling isolated from the world around them.
We learned about these feelings of isolation first-hand ourselves, when conducting research as part of our Patients At The Heart (PATH)* approach with our sister agency, AXON. We learned from those diagnosed with rare forms of brain cancer that many felt forgotten and misunderstood by the public, and even close friends and family. Those we spoke with highlighted that digital groups and online communities helped mitigate these feelings by offering direct access into a world where people have a shared understanding.
Online hubs provide a unique environment to connect an often widely-spread patient population through experience-sharing, knowledge-building and advocacy. Online-sharing helps facilitate the empowerment of patients, by providing a platform for patients to speak, share and connect with others, where elsewhere their voices may simply not be heard. Rare Disease Day itself acknowledges this need to empower the rare disease community, through its #ShowYourRare social media campaign.
Services provided by online communities are by no means limited to patients themselves, but also extend to benefit families and caregivers, who may also be experiencing challenges in sourcing information regarding care, treatment and experiences of rare diseases that affect their loved ones.
Organisations wanting to get involved with rare disease communities, should look to facilitate and support these online networks between people with rare diseases, their families, caregivers and other stakeholders. Through supporting rare disease communities online, organisations will gain a better understanding of the challenges of living with a rare disease, which may ultimately help to bridge the gap between health and social care.
*About our PATH research: Our research sought to understand how language and communications used across patient journeys, impacts on experiences of managing and living with rare and chronic diseases. We identified four points of ‘tension’ in our research that should always underpin how we approach designing communications. More detailed findings on this and how we implement it in the work we do will be coming in 2019. If you would like to find out more about our research or anything discussed here, please get in touch; we want to hear from you – [email protected]
Unmanned aerial vehicles (UAVs, more commonly known as drones) offer enormous potential benefits for society, but is there a form of tech that is more unfairly maligned and misunderstood?
The benefits of drones to life in the UK could be huge. In a commercial context, drones can help monitor crops in agriculture to reduce failure rates, saving farmers money and helping protect natural resources like water. Drones can cut (currently illegal) air pollution levels in UK cities by reducing the thousands of Amazon, DPD and Just Eat delivery vehicles whisking goods and meals to our homes. In the construction industry, drones can improve site safety for workers and speed up construction projects.
Drones also have non-commercial benefits, improving environmental monitoring and wildlife protection, as well as emergency services use like search and rescue or finding missing persons (see more in the Foundation for Responsible Robotics’s excellent report here).
In summary, there’s a lot to like. But it seems, broadly, we don’t.
There is a lack of positivity in the UK for the benefits of drone technology. A 2017 Aeronautical Society survey found that only 46% of British adults think drones can make an important contribution to the UK economy and society.
According to research conducted by the Department for Transport, awareness of the civic and commercial uses of drone technology was generally low among the public, with the overriding impression being that they are for hobbyists and the military (and negative on both counts!). The same research found that focus group participants warmed to the idea of drones on learning more about their civic and commercial benefits.
People’s concerns range from airport safety (understandable given the Christmas disruption at Gatwick and Heathrow) and privacy concerns to environmental impacts like noise pollution and aesthetic impact on the skies. Critically, privacy and safety concerns rank far above what might uncharitably be labelled nimbyism.
This is important for two reasons. First, drone safety can be proven and people reassured by appropriate regulation (such as effective perimeters around airports). Secondly, we see in our everyday use of technology (Google, Facebook, Amazon) that people are willing to deprioritise privacy concerns if the benefit appears to be great enough.
Which begs the question, what is being done to explain to the public the manifold benefits of drone technology and generate positivity towards their use in everyday life?
ARPAS UK, the UK drone association, has shouldered much of the burden of representing the industry with political and regulatory stakeholders like the Civil Aviation Authority. While ensuring the right regulatory framework is in place and that there is an accepted code of conduct are essential for the future viability of the industry, there is a third wheel – public acceptability. The case for drones is not being made persuasively enough to the public or in the media.
The industry needs to come together, find its voice and use creative, thoughtful storytelling to sell a positive vision to the public at large, while increasing awareness of the commercial and civic use cases. Otherwise, the UK risks falling behind in the deployment of drone technology to the detriment of us all.
Written by Philip Armstrong, Account Director in Madano’s Energy practice.
40 million. That’s how many times a video of a first-term U.S. congresswoman speaking at a bland committee hearing has been viewed in a week – more than watched President Trump’s inauguration.
But this is no ordinary politician, this is Alexandria Ocasio-Cortez or ‘AOC’, the 29-year old Democrat who has gone from bartender to progressive political headliner in under a year.
AOC has 3m Twitter followers and a level of interaction for a U.S. politician bettered only by President Trump. Her inaugural speech broke online viewing records. Netflix has a $10m film in the works. The iPhone even autocorrects her name.
Such rapid political celebrity is impressive, but more so is her ability to use this to dominate conversation and promote radical political ideas – like the Green New Deal.
This radical manifesto calls for 100 per cent renewable energy, universal energy efficiency, zero-emission vehicle infrastructure and the elimination of agricultural emissions, alongside social-oriented policies such as affordable access to power and universal healthcare
The merits of her ideas aside, how has she been able to come from nowhere to capture an unrivaled share of voice? What does her rise say about communicating for change in today’s environment?
In less than a year Alexandria Ocasio-Cortez has created her own brand. She has clearly articulated values – on social justice, political reform, climate change – and a transparent backstory that she draws on to connect with her audience and validate her political views. She lives and breathes what she says – online and in-person.
This is critical in today’s communication – whether political or business. Individuals’ personal identity, defined by specific values, is central to today’s polarized public discourse. We increasingly associate with people, brands and ideas that conform to our personal values. This applies to politics, marketing and commerce alike.
These associations are based on trust, that the people or companies we listen to have the values to authenticate what they say. Just look at the reaction to Pepsi when it tried to tie itself in with political protest in the U.S. Or the growing backlash against Google and Facebook.
Authenticity is key to trust, but it won’t alone cut through the noise on conventional and social media and connect with a target audience. This needs conviction – a definitive position, strongly and persistently presented, and a willingness to respond to (inevitable) criticism.
AOC excels here. She takes a position, explains it in compelling language, provides evidence, responds to criticism and persistently returns to the issue – making headlines and generating buzz. She deploys a message over multiple channels – social media, broadcast, events (with video posted online) to ensure wide audience reach. Importantly, she maintain a (combative) dialogue with critics rather than close off discussion.
The campaign against Amazon’s proposed New York HQ heavily promoted by Ocasio-Cortez is a case in point. The brutally honest Airbus critique of ‘no-deal Brexit’ similarly shows a clear consistent position with forceful argument cutting through far stronger than traditional, more subtle corporate communications.
Conviction cuts through, authenticity builds trust, but language is what engages and shapes understanding. AOC makes confusing topics easy to understand. She talks in straightforward language and explains complex political issues through simple human stories*.
Marketing has long known the power of stories. Using stories to explain complex political or financial issues is significantly harder, yet Ms Ocasio-Cortez is deploying them expertly.
Take the 40 million-view video – she creates an imaginary childlike ‘bad guy’ to demonstrate her case against U.S. political campaign finance laws. Compare this to UK Prime Minister Theresa May’s New Year message explaining her Brexit deal. It’s easy to see whose argument is more compelling. Complex issues don’t need complex language.
*It’s interesting that AOC has not been criticized for her language or style so far, unlike other contemporary political storytellers.
Ocasio-Cortez is not simply a political celebrity, she is an advocate of politically radical ideas – from free education to clean campaign finance, Wall Street reform to climate change.
None of these ideas are new. By themselves they are not what is capturing people’s imagination. It’s the combination in to a single ‘Big Idea’ agenda for change, which is woven through every engagement, utlising the language, conviction and authenticity outlined above.
Take that inaugural speech. In a single three-minute address against the U.S. government shutdown, she tells a story of a real constituent that incorporates immigration, living costs and government accountability together with an understanding of the concerns of her supporters.
The value of the Big Idea shows a return to popular idealism, but based on personal values. People will argue over the detail, but they engage with the idea. Indeed, the drive to articulate big goals is a first step toward achieving them. Small ideas and incremental change are not going to cut through and drive debate anymore.
Alexandria Ocasio-Cortez is not eligible to run for President until 2028, yet already she is breaking the mold of political discourse. Even Trump had a global profile and millions of followers before his political views gained credence. Whatever your views on the politics, the lessons for communication are clear.
Written by Michael Zdanowski, Head of Energy at Madano
On any one day over the past few months you would have been hard-pushed to find a slow-news day as the UK edges towards its withdrawal from the EU (currently scheduled for late March this year).
Day-to-day Government business has been cast into the shadows and the major parties – often atomised – broken down into their constituent parts by the wrangling over the future of the UK towards its largest and most important trading partner.
Just this week the Chancellor synthesized the view that instability is the new norm stating that trade tensions and Brexit are “manifestations of fundamental pressures to reorder globalisation”.
Against this background turbulence, it might seem churlish to suggest that UK energy policy is becoming less opaque.
How can that be the case given the instability rooted in the political system and the lack of Government bandwidth due to Brexit?
Beyond the geo-political and macro-economic outlook, a number of conclusions can be drawn.
Firstly, momentum towards ensuring value for money for energy consumers and to seeking low carbon solutions to reduce our dependence on fossil fuels has accelerated.
Business Secretary Greg Clark’s recent speech, entitled “After the Trilemma”, spoke to these dynamics. He clarified the market principle – that the market must take the lead and that all consumers should pay their fair share of system costs (the “no free-riding principle”).
Clark acknowledged the “intrinsic uncertainty about the future” – a nod to the need for Government to be prepared to intervene in the energy market as it already has done with the energy price cap (see below).
While many already question whether the energy trilemma – the backbone of Government policy on energy for 10 years – is truly dead, it is apparent that recent Government thinking on value-for-money is consistent given the decision to postpone construction of the new Wylfa nuclear power station and can the Swansea Tidal Bay project.
Interestingly, Government has decided that there is an abundance of energy and that there’s scant danger of the lights going out soon.
Secondly, policy initiatives designed to shape the contours of the domestic energy retail market have become more firmly established in recent months and years.
It seems clear that the energy price cap – a Labour policy initiative borrowed by the Conservatives – is here to stay. Recent announcements of price rises have been made in response to a new cap set by Ofgem for the start of April.
On the demand side, the rise of tens of energy suppliers, stimulated by a commitment to the longer term policy of deregulation, has led to savvier energy consumers who are much more comfortable than ever switching supplier.
The fact that many smaller suppliers have hit the wall in recent months speaks to a better functioning market that is auguring a new, more sustainable paradigm for the retail market albeit not ideal for the other suppliers who pick up the tab as the failing suppliers leave the building.
Thirdly, the Government has committed further to clarifying energy policy in 2019 through a new Energy White Paper (release date TBC). It is anticipated that the paper will provide greater information on energy baseload in the future as well as the approach to new nuclear and the decarbonisation of transport.
When put alongside a 10 year commitment to developing low carbon technologies in generation and in applications for transport, heat and power expressed through the Climate Change Act, there is arguably more clarity on energy policy for many years.
I’m sure that many energy insiders reading this blog might disagree. They could point to very little happening because of the Brexit backlog. It’d be hard to argue against this.
However, the basic point here is to highlight the fact that energy policy is evolving even as the dark clouds of Brexit threaten to overshadow the economy.
Madano advises clients across the energy and industry sector space – if you’re interested in learning more please drop me or the team a line. You can also follow Madano on Twitter.
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In the same week that the FT reported that Nvidia has “fallen from the ranks of tech darlings”, Matthew Field at the Telegraph delivered an interesting analysis of Amazon and Google’s efforts to sidestep the big chip makers in a bid to save costs amid the AI arms race.
Field details efforts by Amazon and Google to go direct to the big foundries and build their own chips to power AI applications. He also details the efforts of other tech giants to simplify their supply chains, including Apple’s “OEM to foundry direct” efforts for the A12 bionic chip in iPhone XS.
At a time when people have fretted endlessly over the increasing power and network effects of the large monopolies, is there a concern about them owning a greater share of the supply chain on technology that provides AI applications?
News in Brief:
Home Secretary Fires Warning Shot
Amid calls for tougher controls on social media content eulogising knife crime, the Home Secretary Sajid Javid called on leading tech firms to apply the successful machine learning approaches which have helped to automate the removal of terrorist propaganda and material related to child sexual exploitation. Both a pat on the back and a warning shot, Mr Javid told BBC Newsbeat “we are going to legislate, and how far we go depends on what you decide to do now.”
Government invests £18 million in AI and digital design research projects in the construction sector
The funding from UK Research and Innovation is part of the transforming construction challenge – a £170 million government commitment, matched by £250 million from industry – to embed new approaches and techniques that enable the UK to become a world leader. The funding announcement also outlined one of the aims will be to develop digitally-enabled simulations that improve the quality and design of buildings.
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