Part 2: Prevention and Control of Rheumatic Heart Disease in Kenya: Progress is on the horizon

This week on PLOS TGH – we hand over to Dr Duncan Matheka and his group, for their second post on Rheumatic Heart Disease in Kenya.

 

Rheumatic heart disease (RHD) has been long neglected in the developing countries – yet a ‘preventable’ disease that is easy to manage only if detected early. We hereby highlight a number of multi-sectoral initiatives mainly targeted at the Kenyan communities towards combating RHD.

 

1. RHD Family Support Clubs

RHD Family Support Clubs are a useful way of promoting holistic RHD care in Kenya. Kenya launched the Nairobi RHD Patient Support Club on Saturday 8th March 2014 at the School of Medicine, University of Nairobi. The club has adapted a person-centred model that has been effectively used by CLAN (Caring and Living as Neighbours – an Australian NGO) to improve quality of life for children and adolescents living with a range of chronic health conditions in low-income settings in the Asia Pacific region. CLAN utilizes a rights-based, community development framework for action, and focuses multisectoral, internationally collaborative action on five key pillars:

(1) Affordable access to medicine (monthly penicillin) and equipment (echocardiography) (2) Education (of children with RHD and their families, health care professionals, policy makers and the national and international community), research and advocacy
(3) Optimal Medical Management (through primary, secondary and tertiary prevention)
(4) Establishment and development of Kenyan RHD family support clubs
(5) Reducing financial burdens on and promoting financial independence of families living with RHD.

Support clubs offer material, moral, and psychological support within a cost-effective, strategic, sustainable, health system strengthening, multi-disciplinary approach. Successful engagement of a broad network of national and international multi-sectoral organizations around the Kenyan RHD support club launch of 8th March 2014 established the Kenyan RHD Community as a visual hub for ongoing person-centred health care in the country. The many and varied stakeholders engaged around the RHD Club meeting took up roles to support and work in partnership with the RHD community over the longer term, to ensure no affected child will: go without their monthly injection of penicillin; be lost to follow-up; miss out on education due to this disease; have their life cut short because they cannot access medical services; or suffer unnecessarily because of a lack of understanding of the best ways to manage RHD. Moreover, it offers an impetus for more sustained national action to reduce the prevalence of RHD in Kenya.

Early indications suggest support clubs as modelled in the Asia Pacific region have potential for empowering families and communities in Kenya to engage with a broad range of partners around a united vision of improved quality of life for children who are living with RHD in Kenya. Moreover, the club offers the members an opportunity to advocate for their needs collectively, while encouraging and supporting each other.

 

2. Education and Creating awareness

Health professionals have been travelling nationally to provide talks to primary school-going children in Kenya. In one program, student education utilized innovative technology (an interactive digital module) so as to optimally engage the children and promote learning about RHD (Kozicharow et al, 2013). The module developed by WiRED international (a US-based non-profit organization working in Kenya) had simplified animated presentations linking sore throat, rheumatic fever, and RHD, as well as prevention strategies. The module also introduced questions throughout the presentations to students and provided instant feedback to reinforce key concepts. WiRED promotes the vision that educating children at an early age has long-term benefits, because most children will retain key messages as they grow older, and pass the messages on to their families and peers during school holidays (Céspedes et al., 2013, Kozicharow et al, 2013). Teachers are also targeted during the training sessions so that they can act as reference points for the students who are in constant contact with them.

In Kenya, the Kenyan Heart National Foundation has also used its School-based ‘Talking Walls’ campaign to educate school-going children on prevention and control of RHD (Kenyan Heart website).

 

3. Screening and early diagnosis

Mater Hospital in Nairobi, Kenya runs a school-based rheumatic fever and RHD prevention outreach program which offers diagnostic, preventive, educational and curative services to primary and secondary school children in various parts of the country (Jowi, 2012).

 

 4. Advocacy and Streamlining Healthcare Infrastructure

As part of Non-Communicable Disease (NCD) prevention and care activities in Kenya, the Kenyan Ministry of Health (MOH) in collaboration with World Health Organization (WHO), World Heart Federation and NCD Alliance Kenya (NCDAK), is holding a stakeholders forum to work out best modalities of incorporating RHD within healthcare services in Kenya. The purpose of holding this forum is to increase awareness of the continuing burden of RHD and the need to specifically include RHD prevention and control as part of broader NCD initiatives. RHD prevention and control needs specific initiatives not addressed in the common risk factors approach by global and Kenyan NCD action plans, nor the current Kenyan National Health Sector Strategic plan.

 

5. Opportunity with healthcare decentralization

Kenya is currently undergoing decentralization of government functions, including healthcare, which means that there is a renewed opportunity to integrate RHD care into other regions of the country and build an overall healthier Kenya. As 47 counties of Kenya absorb the healthcare mandate, it is expected that greater community involvement will result in tailored healthcare for each region. Devolution will facilitate more straight-forward avenues for advocacy on NCDs at the county-level, as the decision-makers in government will be more localized and have so far demonstrated themselves as easier to communicate with. County health policymakers are usually also native to the communities that they serve and have a more vested interest in improved health outcomes in their designated regions, than the previous national level decision-makers – hence more community involvement, empowerment and development.

 

6. Role of multi-sectoral partnerships

For both healthcare devolution and expanded care for RHD, there is a push to build private-public partnerships. Both public and private healthcare providers must have a seat at the policy table and work together, as multi-sectoral action will have the biggest impact within communities. Yet, the need to safeguard public health (using a rights-based approach) must be emphasized and the terms of such partnerships critically evaluated and monitored. For instance, the World Heart Federation is partnering with Kenyan organizations (Kenyan Heart National Foundation, Kenya Cardiac Society, etc) to streamline healthcare provision for RHD patients.

Concluding

In conclusion, besides the foregoing, there is need for more initiatives to combat RHD in Kenya by increasing community awareness and involvement and ensuring better healthcare infrastructure – thus promoting primary and secondary prevention of rheumatic fever and RHD.

 

References

  1. Kozicharow A, Ghuman S. Rheumatic heart disease project in Kenya tests WiRED training program. Available from: http://www.wiredinternational.org/kenya/kenya_RHDprojectTestsWiRED.html [cited 22 October 2013].
  2. Céspedes J, Briceño G, Farkouh ME, Vedanthan R, Baxter J, Leal M, et al. Targeting preschool children to promote cardiovascular health: cluster randomized trial. Am J Med 2013; 126: 27–35.
  3. Kenyan Heart Website: http://www.kenyanheart.or.ke/talkingWalls.html
  4. Jowi Christine Awuor. 2012. “African Experiences of Humanitarian Cardiovascular Medicine: A Kenyan Perspective.” Cardiovascular Diagnosis and Therapy 2 (3): 231–39. doi:10.3978/j.issn.2223-3652.2012.07.04.

 

Authors:

Dr. Duncan M. Matheka is a Kenyan Medical Doctor and Public Health Researcher. He is the African Representative of Young Professionals Chronic Disease Network (YPCDN) and the Nairobi RHD Club Coordinator. Twitter @duncoh1

Dr. Laura Musambayi is a Kenyan Medical Doctor and the Nairobi RHD Club Assistant Coordinator.

Mohamed A. Omar is a fourth year medical student at the University of Nairobi, Kenya.

Dr Kate Armstrong is the Founder and President of CLAN (Caring & Living As Neighbours) and the Executive Secretary of NCD Child (a global coalition committed to integrating children and adolescents within the global NCD, health and development discourse). Twitter @ncdchild

 

 

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A people’s movement against chronic disease

This week, in time for the UN NCD Review meeting in New York City, Dr. Jeremy Schwartz makes the case for a strong civil society movement against global Non-Communicable Diseases.  

In some way or another, every one of us has been touched by a chronic disease. Words like hypertension, diabetes, and cancer are part of our everyday vocabulary. But most people I speak with believe that these diseases only affect people in rich countries- that these are not afflictions of the world’s poor. This is a myth. Six out of every ten deaths on earth are due to chronic, non-communicable diseases (NCDs). What’s more, eighty percent of these deaths occur in low- and middle-income countries. In these countries, for reasons we do not completely understand, NCDs affect people at a younger age, during their most economically productive years. Because of NCDs, $47 trillion will evaporate from the global economy over the next two decades.

 There are many reasons for this rising tide of NCDs. Western countries have exported many of their worst habits- like smoking and diets high in fat and salt- that cultivate these “lifestyle diseases”.  In poor countries, sedentary desk jobs are replacing more active manual labor. Digging deeper, though, the NCD epidemic becomes entangled with the wills of multinational food, agriculture, tobacco, and pharmaceutical companies. Trade agreements favor exportation of countries’ fresh fruit and vegetable crops and importation of canned foods high in salt. Lawmakers lack the political will to slap taxes on tobacco products. Medicines that are essential to treating these conditions remain unaffordable.

How is it that an issue so grave is still news to so many? Let us not forget how HIV/AIDS leapt onto the global stage in the late 1980s. It was not simply because people were sick and dying. It was because scores of passionate activists banded together and forced the world’s decision-makers to pay attention. Money, political will, and progress in fighting back this pandemic followed.  NCDs need a voice. But the people must find it first.

HIV activists demonstrate outside the Food and Drug Administration Headquarters, October 1988. Source: The Atlantic

Here in the United States we have the luxury of a strong civil society- the collective of non-governmental organizations and institutions that advocate for us. We live amongst so many advocacy organizations that it is easy to lose sight of this. The American Heart Association, American Diabetes Association, and American Cancer Society are some of the largest. We wear ribbons and t-shirts displaying logos and disease-specific colors to show our support. We text-message donations from our cell phones. We take part in walk-a-thons, marathons, and telethons. According to The Giving Institute, Americans donated $33 billion to health-related organizations in 2013. These major organizations amass our donated wealth and are thereby able to act on our behalf- lobby government, fund biomedical research, and set up patient support networks.

Americans donated $335 billion to charity in 2013. Of this, 10% was directed to health-related organizations. Source: Giving USA 2014

Americans donated $335 billion to charity in 2013. Of this, 10% was directed to health-related organizations. Source: Giving USA 2014

Most of the world, however, lacks a strong civil society. Its people lack a voice and governments remain unaccountable. A critical check on the system is missing. But there has been some important progress. The NCD Alliance has provided a framework for evaluating a country’s commitment to, and progress in fighting, NCDs. An exciting effort in East Africa is bringing together the relatively new offshoot NCD Alliances in that region. Professor Gerald Yonga, a Kenyan physician and co-chair of this regional effort, spoke at the United Nations last month. He urged governments to prioritize NCDs in their development plans. He spoke of building this regional initiative and of its first product- a charter that was signed in early June by local advocacy groups from across the region. This is new and it is thrilling. It is giving a voice to the people. But ventures like this are not sustainable without financial resources. Our European counterparts have taken the lead on this. The Danish Civil Society Fund has underwritten the East African Alliances and provided much needed technical support.

East Africa NCD Alliance Initiative Planning Committee at Uganda NCD Alliance Headquarters, Kampala, Uganda.

East Africa NCD Alliance Initiative Planning Committee at Uganda NCD Alliance Headquarters, Kampala, Uganda.

Today and tomorrow, heads of state, diplomats, and ministers of health will convene at the United Nations in New York. They will assess progress made since a High Level Meeting on NCDs in 2011. My friend and role model, Dr. Sandeep Kishore, who founded the global, grassroots Young Professional Chronic Disease Network, will stand before this assembly. He will correctly insist that NCDs are the social justice issue of our time. Governmental and global priorities are misaligned. People are sick and dying from preventable diseases.

A Global Civil Society Fund for NCDs could change this. The United States and other countries of the “global North” must realign some of our aid toward supporting a vibrant civil society for NCDs. The East African example is a model that must be fortified and replicated. With far fewer dollars than is needed for prevention and treatment, a fund like this could catalyze a global people’s movement against NCDs. The people in this world who are most in need of a voice might finally be able to find one and true progress against NCDs will follow.

Dr. Jeremy Schwartz is a physician at Yale School of Medicine and Director of Chronic Disease Integration and Delivery Science at the Yale Equity Research and Innovation Center. Follow him @jeremy_schwartz

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What’s an NCD?

With the UN NCD Review this week in New York City, we recap on what Non-Communicable Diseases are… And why they matter.

This week in New York City, all eyes in the Global Health community will be on the UN NCD Review. As the last three years have flashed by since the 2011 High-Level Meeting, now is the moment to take stock and reflect on the progress – and challenges – of tackling this growing epidemic.

General Assembly resolution 66/2 of 19 September 2011, containing the Political Declaration of the High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases called for the convening of a comprehensive review and assessment in 2014 of the progress achieved in the prevention and control of non-communicable diseases.

 

Forgotten what NCDs are? Watch this short voxpop from NCDFREE and jog your memory…

 

So what are the facts on NCDs?

- Non-Communicable Diseases are a group of varied and often chronic conditions including diabetes, heart disease (including stroke), cancers, chronic lung diseases and mental illness.

- Together, NCDs are the leading contributors of global morbirity and morbitity accounting for 60% of global deaths in 2010.

- 80% of global NCD mortality occurs in the world’s low and middle-income countries, representing a barrier to economic and social development.

- NCDs threaten to slow, halt and at worst, reverse progress on the MDGs and their replacement agenda.

 

To understand more, click on the e-lecture below to learn what NCDs are, who they affect and what you can do.


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Dr Alessandro Demaio (@SandroDemaio) is Postdoctoral Fellow in Global Health at the Harvard Global Equity Initiative, Harvard Medical School and an Assistant Professor at the University of Copenhagen.

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A Peruvian Story of Cancer, and Health

This week, we bring you the latest in our Global Health short films, by Alessandro and the team at NCDFREE - partnering this time, with GlobalRT. Set in Lima, the films follows the stories for two young females affected by and affecting cancer. This film was commissioned and co-funded by GlobalRT, UICC and NCDFREE.

 

 

Earlier this year, I wrote a short piece on cancer care while shooting a global health film in the Peruvian capital, Lima. Highlighting the progress, myths and challenges in oncology and public health – and exploring some of the incredible work of innovative healthcare providers in resource-poor settings.

As an academic, I see an essential mandate of my role is to break down the barriers between science and the community. Not only to develop and further science – but also to communicate it to a broad audience in a way that is engaging, understandable and relevant.

To do this, I am always looking for new, effective ways to connect with a wide audience and with them, question the things we do as a society. Challenge the everyday rhetoric and flag processes, conditions or ideas that are unjust, unsustainable, inefficient or inequitable. Focusing on Global Public Health.

One very important way I see we as academics can continue to reach and engage everyone in science in 2014 – is through film. With this in mind and together with our sensational team at NCDFREE, we have now made a handful of short video-based narratives over the last 12 months – each focusing on an important health issue, hero or message.

For this latest film, we travelled to Peru to capture the story of a young cancer survivor and mother – and the doctor who made her survival possible. Entitled “Veronica: a Peruvian story of cancer, and health” – we highlight the journeys of two strong young woman affected by and affecting Non-Communicable Disease (NCDs). We aim to engage, inspire and challenge you – and your ideas about health.

Supported and commissioned by GlobalRT and the UICC – this film was shot working closely with an incredible local videographer, Lali Houghton.

For more information on radiotherapy and the important work of GlobalRT – or on NCDFREE and the making of this short film – head to the websites.

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Dr Alessandro Demaio is Postdoctoral Fellow in Global Health and NCDs at the Harvard Global Equity Initiative, Harvard Medical School and an Assistant Professor at the Copenhagen School of Global Health. To follow the next journey in Global Health film, connect with Sandro on Twitter via @sandrodemaio and @NCDFREE.

The Conversation

The Conversation

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Translating the Untranslatable #imaginemed Part 3

This week on PLOS Translational Global Health, Alexandra Abel brings us the final part in the #imaginemed series.

Welcome back to Imagining the Future of Medicine at the Royal Albert Hall.

The final session began promptly as an eager audience clambered to re-take their seats. One man even hopped up on stage in an effort to more speedily access the stage-side stalls seating area! If you’ve been reading from Part 1, you’ll recognise this as our unanticipated stage invasion. Thankfully, hundreds didn’t follow after Dara quipped, “I like the way you climbed up on stage there”. After that tiny bit of excitement, on to session three… Translating the Untranslatable.

Alison talks about Music as a Healer. Photography: Alan Liu

Alison talks about Music as a Healer. Photography: Alan Liu

Someone very accustomed to being on stage at the Royal Albert Hall is Alison Balsom, who wanted to tell us about the healing power of music.

This is something very dear to me as I have always thought of music this way, and at uni, investigated benefits of learning a musical instrument for older people.

Alison started off with, of course, a beautiful trumpet performance, and then explained that a lot people say music can be medicine, but without much thought as to why this might be.

“As a musician, I feel that music is meditation. It’s self-expression. It’s physical. It’s thrill seeking. And it’s cerebral.” – Alison

Brass for Africa empowers young people through music and humanitarian programmes.

Brass for Africa empowers young people through music and humanitarian programmes.

Alison went on to show a video made especially for ImagineMed, filmed during her recent trip to Kampala with the fantastic Brass for Africa. This charity engages children from disadvantaged communities and works with them through music on wider issues they are experiencing. Brass for Africa’s most important projects are in two orphanages, The Good Shepherd Home and the Bethlehem Orphanage; and for the children there, the music project is the highlight of their week. The film showed how music had profoundly affected the lives of these children, and Alison’s message was that music can engage, empower, and repair, and has a vital place in science and medicine.

“Some people would argue that you don’t need music like you need food and water, but I would say it’s about flourishing as a human being, not just surviving.” – Alison

Tali talks about The Surprising Science of Future Thinking. Photography: Alan Liu

Tali talks about The Surprising Science of Future Thinking. Photography: Alan Liu

Next up was cognitive neuroscientist Tali Sharot, who began by asking the audience how they would talk themselves out of eating an imaginary ‘naughty treat’ placed in front of them. Would they think, ‘that will make me fat’, or would they think, ‘I’ll be healthier if I don’t eat that’. Most of the audience went voted for the fat option, but Tali went on to explain how this isn’t the best way to encourage positive behaviour. Along with our natural optimism bias, another focus of Tali’s research, she has found people are also resistant to warnings. We tend to tell ourselves not to worry about things that might happen, rather than implementing early mitigation measures, and we are naturally more receptive to information we want to hear. We appear to have an inability to learn from bad news, and children, teenagers, and the elderly are least likely to learn from warnings.

When a known camera was installed at a hospital to monitor staff’s practice of hand washing between seeing patients, only 1 in 10 people washed their hands. But when an electronic board was introduced, stating how well the ward were doing, i.e. “hand washing rates on this ward are at 60%, higher than average!” hand-washing rates rose dramatically to 90%. This is because of three principles that drive action to progress: immediate rewards, social incentive, and progress.

Katherine talks about How to Have a Good Death. Photography: Alan Liu

Katherine talks about How to Have a Good Death. Photography: Alan Liu

Penultimate speaker of the day was palliative care specialist Katherine Sleeman, who had the audience applauding in the first minute as she explained that despite the incredible advances in health and medicine over the last century, global death rates still remain unchanged at 100%!

Katherine explained that the success of modern medicine has resulted in death being viewed as failure, and just 0.1% of the NHS budget is put towards palliative care. The majority of us will live with, and die from, chronic medical conditions, resulting in a slow deterioration of function. She noted that a ‘good death’ may mean different things to different people, but sophisticated hospital care may paradoxically be worsening, not improving, our quality of life… and quality of death. Palliative care can be very individual, finding out a patient’s worst problems and trying to improve them, but it may not be a case of quality versus quantity as studies have shown palliative care helps cancer patients to live longer.

Palliative care doesn't have to be quality of life versus quantity. Photography: Alan Liu

Palliative care doesn’t have to be a case of quality of life versus quantity. Photography: Viviana Motta

Society needs death as much as it needs new life, and yet it is often so poorly planned for. Katherine’s message was that people find it hard to talk about death, but it is an important conversation to have so we can start ‘saving deaths’ as well as saving lives. I can safely say that Katherine’s talk was one of the most warmly received, and it was fantastic to see such a wonderful reaction to an incredibly important topic generally regarded as morbid or taboo.

“Stop whispering and start talking.” – Katherine

Ben talks about Bad Science. Photography: Alan Liu

Ben talks about Bad Science. Photography: Alan Liu

Our final speaker of the day was Bad Science writer Ben Goldacre. I mean someone who writes about bad science, not a bad science writer as one lovely tweeter noted (thanks, George Ward, for pointing out my grammatical ineptitude early on). Ben is actually a rather good science writer and an excellent science speaker, and it was fantastic to have him close the show at ImagineMed.

Ben outlined the need for, and success of, his popular All Trials campaign, which calls for greater clinical transparency and the results of all trials to be published. He explained that 85% of drugs prescribed today came on the market over 10 years ago, and the trial data for these medications needs to be available now so we can be certain we are using evidence-based interventions. Ben showed us 47 slides in 15 minutes, but his message was simple: access to full methods and results matter.

Ali says we must believe in the power of imagination. Photography: Alan Liu

Ali says we must believe in the power of imagination. Photography: Alan Liu

Just before the end of the show, our wonderful director Ali Rezaei Haddad took to the stage to say a few closing words and thank the many people who helped make this event possible. A few years ago, when Ali founded the Avicenna Project, he never thought it would lead to a full day event at the Royal Albert Hall. A children’s cancer lecture series for 50 people at our university led to a general forum on health and medicine for 500 people at the Royal Geographic Society in 2013; and the day after our 2013 event, he picked up the phone and called the Hall (without fear of sounding stupid). Ali’s message was that we must all believe in the power of imagination, or exciting ideas will never take form.

~ That’s all, folks! ~

A very happy team at the end of the show!

A very happy team at the end of the show!

The event was live streamed by the fabulous Be Inspired Films, and we are extremely happy to say that people from 44 different countries tuned in to watch the live stream.

We also hosted a multilingual live blog on our homepage throughout the day. At one point during the show, our server actually crashed because thousands of people were trying to access the website at once!

Thank you to our multilingual live blogging team, Nadia Ceratto, Christina Wong, and Mahiben Maruthappu, and social media coordinator Reena Wadia. Also to our photographers Alan Liu, Vivana Motta, and Ellie Pinney, and programme artist Conor Farr.

Post-show festivities in the gallery. Photography: Zinah Sorefan

Post-show festivities in the gallery. Photography: Zinah Sorefan

Videos of all of the talks and performances are now available to view on the ImagineMed website.

A massive thank you to all of our speakers and performers. And to our host, Dara, who hopefully collected some interesting anecdotes for his doctor-dominated dinner parties.

Thanks to the team at the Royal Albert Hall, including: Chris Cotton and Jasper Hope; Ed Cobbold and Caroline McNamara for their tireless efforts in the planning of this event; Rick Burin for delightful emails and concurrent expert press exec-ing; Mo Crowe for knowing absolutely everything and keeping us all calm backstage; Jess Silvester for never losing patience with marketing requests; Lord Matt Griffin for first-rate digital content management in the face of tricky web CMS; and Ellen Morgan, who managed to get one of our top online game scores, even higher than the girls who set the questions.

itfombraintgh

The ImagineMed circle.

The Royal Albert Hall really is an incredible place. Not only is it a world-renowned performance venue, it is also a charity dedicated to increasing access to the arts and sciences, supporting the cultural life of the country, and inspiring future generations. Officially named the Royal Albert Hall of Arts and Sciences, it has played host to a number of science events featuring leading experts such as Stephen Hawking, Richard Dawkins, even Albert Einstein. And Einstein knew a thing or two about imagination…

“Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand.” – Albert Einstein

 

I hope you enjoyed the #imaginemed series. Thanks for reading, and please do watch the videos when you have the time! Again, you can find them here.

Alex

Alexandra Abel is a graduate from Imperial College London and the Royal College of Music. She has a keen interest in both Global Health and Performing Arts. From September, she will be a medical student at Hull York Medical School.

Join her on twitter @alexandraabel

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Medicine Without Borders #imaginemed Part 2

This week on PLOS Translational Global Health, Alexandra Abel continues the round up of her #imaginemed event.

Welcome back to Imagining the Future of Medicine at the Royal Albert Hall.

The Kaos Signing Choir for Deaf & Hearing Children. Photography: Alan Liu

The Kaos Signing Choir for Deaf & Hearing Children fill the stage. Photography: Alan Liu

Straight after the break, The Kaos Signing Choir for Deaf & Hearing Children began their performance, with beautiful renditions of ‘One Earth, One Sky’, ‘True Colours’, and ‘Respect’. The choir is the only integrated deaf and hearing children’s choir in the UK. They quickly got the audience singing and signing along with them, and we were dancing backstage. Their beautiful performance really has to been seen to be appreciated so please do watch their performance when the videos are available.

Time for Medicine Without Borders, a session all about global health and global medical innovation. Session two began with maxillofacial surgeon Leo Cheng, who is quite possibly one the nicest and most inspiring people you could ever hope to meet. Leo told us of his incredible work with Mercy Ships in West Africa where he and other dedicated volunteers offer life-changing and life-transforming surgery as well as medical advice, materials, and training.

Leo talks about Offshore Medicine. Photography: Alan Liu

Leo talks about Offshore Medicine. Photography: Alan Liu

Some of the patients who come for surgery are so demoralised because of the way they have been treated by society. Leo said the first thing he does is go up to his patients, look them in the eye, introduce himself and shake their hand – immediately reminding me of Kate Granger’s wonderful #hellomynameis campaign. This basic human contact and understanding is so important in medicine, especially to these patients; and as Leo so beautifully explained, “all healing starts with acceptance”. Mercy Ships’ aim is to ‘bring hope and healing’ to thousands of people who would never have believed it possible, and Leo’s talk reminded me of the lovely proverb, “he who has health has hope, and he who has hope has everything”.

Leo went on to tell us more about Africa Mercy, a 16 and a half thousand ton ship, the biggest non-governmental hospital ship in the world. There is a library, a gym, a doctor and dental clinic, a school for primary and secondary pupils, and even a Starbucks! Leo explained that there really is a part to play for everyone who wants to help. His wife and daughters have joined him volunteering on the ship. And even those with no medical training are able to help out, for example, preparing food for the people on board. Leo’s message was that anyone can use their compassion to help others in some way, and urged us to turn our emotion into compassion and action.

Ali talks about Smart Healthcare. Photography: Alan Liu

Ali talks about Smart Healthcare. Photography: Alan Liu

Next up was healthcare entrepreneur Ali Parsa. He began his talk with a story about a frog, which pointed to the conclusion: innovation is never about what you have and what you’ve got to give, it is always about what people need. Ali explained that basic access to a doctor is real problem worldwide, particularly in rural areas of developing countries, before unveiling his new app, Babylon, with an exciting on stage demonstration.

“Nowadays, whether you are in Kenya or Kentucky, you can get your music at the same time… can we do that with healthcare?” – Ali

The aim of Babylon is to make peoples’ day-to-day access to healthcare as simple as possible, and the name of the app comes from the fact that Ali has always been fascinated by the Babylonian people. 2,500 years ago, when the people of Babylon were sick, they were asked to go and stand in a square, and for passers-by, it was their civic duty to ask the sick people what was wrong. If they’d come across that ailment before, they would share their wisdom. As a result, Babylonians had the longest life expectancy in the world.

Starfish_Goa_2007

A starfish on the beach in Goa.

Having started his talk with a story about a frog, Ali ended with a delightful story about a starfish. In Goa, where the beach runs for miles, hundreds of starfish are washed up on the shore and bake in the sun. The story goes that one day, a child was picking up these starfish one by one and throwing them back into the sea. An old man came along and said, “child, why are you doing that? What difference will it make, you will never be able to throw all of them back”. The child picked up another starfish, threw it back into the sea, and said, “it made a difference to that one”. This beautiful story represents the way Ali feels about his new venture; he said that Babylon may not be the answer to everything, but if it can go some way to advancing this type of accessible healthcare, he will be happy.

In his post-talk Q&A, Ali explained that Babylon aims to do for healthcare what Amazon did for the delivery of books, and what iTunes did for the delivery of music.

At this point in the programme, we were very pleased to welcome on stage our special guest, Jay Walker. Many will know Jay as the curator of TEDMED, but he is also the creator and curator of The Library of the History of Human Imagination, which holds an impressive collection of artistic, scientific, and historical artifacts. Jay’s library, with its floating platforms, glass bridge, and connecting stairways contains some truly remarkable treasures, including an original 1957 Russian Sputnik, and a 1699 atlas containing the first maps to show the sun, not the earth, as the centre of the known universe (a map that divides the age of faith from the age of reason).

I think I can speak for our entire team when I say that Jay, a noted expert on human imagination, is one of the most knowledgeable men we have ever had the pleasure of meeting. He is also extremely passionate about sharing this knowledge, and using his expertise and experience to benefit others – something that we, and our speakers, truly appreciated throughout the day.

Jay talks about The Next Revolution in Health and Medicine. Photography: Alan Liu

Jay talks about The Next Revolution in Health and Medicine. Photography: Alan Liu

Jay took us on a journey from the moment life began on earth, to the point that humans started to create more sophisticated tools, learn ways to communicate – started to have imagination! At this point, man, above all other animals, takes control of the natural order, and ‘Civilisation 1.0’ emerged from this point, 10,000 years ago. More recently, the dawn of The Scientific Method unleashed a torrent of change in the world, and placed man in control of the entire shape of civilisation.

But Jay provided some evidence to prove how little we currently understand about our bodies. Firstly, for 25% of all people who die of heart disease, the very first symptom is death. Secondly, the smallest cancerous tumour we can find is 100 million cells, and if you have a tumour of 100 million cells, you’ve had cancer for 6 years. So the earliest we can detect cancer is 6 years after it initiates! And thirdly, in our bodies, our own cells are outnumbered 9 to 1 by bacteria, but before about 5 or 6 years ago, we couldn’t even sequence the genome of these bacteria – we knew nothing of the microbiome.

Jay explained that we have reached another turning point, and are entering a new era, ‘Civilisation 2.0’! We are on the cusp of being able to understand what is going on in our bodies internally, but we also being able to take control of it. For the first time in the history of the planet, synthetic biology, the name we give to the manipulation of the data of life, is going to compete with natural selection.

Paul and Jay discuss The Age of Information Meets the Age of Bio-Science. Photography: Alan Liu

Paul and Jay discuss The Age of Information Meets the Age of Bio-Science. Photography: Alan Liu

Imperial’s Paul Freemont, co-director of the EPSRC Centre for Synthetic Biology and Innovations, joined Jay on stage for a fascinating discussion about the age of information and bio-science. Paul talked about his work on the development of synthetic biology platform technologies and biosensors. He explained that they have been doing this kind of work for about 10 or 12 years now, but it is accelerating incredibly rapidly, and the applications of synthetic biology are wide ranging, from healthcare to bio-mining.

 

That’s all for session 2.

Check back next week for #imaginemed part 3.

Alex

Alexandra Abel is a graduate from Imperial College London and the Royal College of Music. She has a keen interest in both Global Health and Performing Arts. From September, she will be a medical student at Hull York Medical School.

Join her on twitter @alexandraabel

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A quest for a Healthy Tax Reform in Chile

This week on PLOS Translational Global Health, Sebastián Peña, MD, MSc, from the Department of Health, Municipality of Santiago discusses the Coordination of the Front for a Healthy Tax Reform.

Chile is undergoing the largest tax reform since the return of democracy in 1989. The goal is to increase the tax revenue in $8,200 million to finance a deep educational reform that will provide free, public and quality education for all.

Flickr / geezaweezerIn this context, the Government of Michelle Bachelet has included a raise in sugar-sweetened beverages (SSBs) and alcohol as “corrective taxes”. The reform seeks to increase an existing ad-valorem tax on non-alcoholic beverages of 13% to 18% for sugar-sweetened beverages. Alcohol taxes would change from its current structure (15% for beer and wine and 27% for spirits) to an ad-valorem base tax of 18%, 0.5% extra per each degree of alcohol content and 0,03 monthly tax unit per litre of pure alcohol. This would result in a raise of 7-23% in tax, affecting more alcoholic beverages with higher alcohol content and cheaper prices, the latter resulting from the per unit tax.

Reactions against these taxes where almost immediate. The day after the announcement, a Senator argued that the alcohol tax was a “grave to the small producers of pisco [a spirit produced from grapes]”. A few days later, Andrónico Luksic, owner of Chile’s largest alcohol producer Compañia Cerverías Unidas -, expressed his concerns about the raise in alcohol taxes. Soon after, 8 MPs signed an agreement to request President Bachelet to drop alcohol taxes to protect the producers of pisco. Flickr / geezaweezer

Taking into account this scenario, a group of public health professionals started to discuss the need to take action to demand a raise in SSBs that would effectively reduce consumption (from 13% to 33%, as suggested by PAHO), to prevent alcohol taxes to be dismantled completely from the reform and to request including a significant raise in tobacco taxes. Perhaps more importantly, our main objective is to bring to the forefront the role of Governments in the health of populations and the use of taxes as cost-effective ways to reduce consumption of alcohol, tobacco and SSBs and the resulting death, disability, low productivity and violence.

With these objectives in mind, we created the Frente por una Reforma Tributaria Saludable (Front for a Healthy Tax Reform). An invitation was sent to a wide range of organizations from the civil society, professional associations, scientific societies and colleagues to join the Front. Currently, the Front consists of 13 organizations including well-known academic institutions, NGOs, trade unions, parents and medical associations and scientific societies. The advocacy work has been divided in three areas: media, parliament and civil society and we have organized three massive twitter events (#ReformaTributariaSaludable), written several columns in national newspapers and blogs, given an open letter for the Minister of Finance and met with the Minister of Health and several members of the Parliament.

Flickr / Latin America for LessThe day after our first Twitter event, the Minister of Finance gave up to pressure from the MPs and agreed to eliminate the per unit tax, resulting in a 50% drop in the alcohol raise. As compensation, the Government introduced a tobacco tax that would only result in a 1% price rise.

Our advocacy work has continued and we are starting to see some results. 50 MPs signed a petition for the Government to raise SSBs taxes to 30% and include a tax on all sugary and salty products. Later and following our proposal, the request has been to include a tax on all processed foods with an energy density higher than 275 Kcal/100 grs, following the recommendations of the World Cancer Research Fund and the experience of Mexico.

But this is a big fight and the opposition, fierce. Two weeks ago Coca-Cola, Nestlé, Compañia Cervecerías Unidas and Carozzi announced the creation of a coalition to fight the raise in corrective taxes. El Mercurio, Chile’s largest newspaper wrote an editorial arguing against “healthy taxes” as effective means to reduce consumption. In their opinion, education was instead a much more effective way.

Flickr / antifluorThe quest for a healthy tax reform in Chile is ongoing and now the discussion has moved to the Senate. The public health community is organized to challenge the economic and political power of the food, alcohol and tobacco industry. To what extent we will succeed remains to be seen.

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Dr Sebastián Peña is a Chilean MD with a European MSc International Health. He is Chief of Quality Unit, Department of Health, Municipality of Santiago and currently a visiting scholar with the National Institute for Health and Welfare, Finland. Follow his work via Twitter - @spenafajuri.

This blog represents the views and ideas of Dr Sebastián Peña.

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#imaginemed: Thinking Outside the Box (Part 1)

This week, PLOS TGH is handed over to the talented and articulate Alexandra Abel. Combining a passion for medicine, global health and the arts, she reports on the recent #imaginemed event, London.

Sandro

The day before show day, like true scientists, we stood up in the gallery at the Royal Albert Hall contemplating what could possibly go wrong. We recalled the time that over 100 members of the audience decided to join Pete Doherty on stage during his solo performance in 2008, but swiftly noted we did not anticipate the same problem at our event. As exciting as cardiothoracic and maxillofacial surgery are, particularly to us, they don’t generally trigger mass stage invasion. Not during lectures anyway.

A pre-show view from the ImagineMed stage. Photography: Alan Liu

A pre-show view from the stage. Photography: Alan Liu

The following day, while setting up and trying to keep to time, I think we all took at least one unscheduled moment to appreciate just how breathtakingly beautiful the Hall really is. When we worked with Focus Active Learning to make our online game, we learned a lot about the Hall in the process.

For example, there are over 13,000 letter ‘A’s around the Hall to commemorate Prince Albert, over 6 million red bricks make up the Hall’s distinctive exterior, and there are 14 bars (as in drinking ones) in the Hall. But no fun facts compare to standing on the stage looking up at the tiers and the fluted aluminium roof and looming diffuser discs.

 

Meanwhile, over at the Sir Alexander Fleming Building of Imperial College London, an important inaugural event was already underway. Biotech showcase The Cell, in partnership with NeuroPro, sought to showcase a variety of innovative healthcare technologies, and Neuropro showcased their EEG headset, NeuroTrail, which wirelessly monitors real-time EEG. Fifth Sense introduced Scentee, a smartphone attachable olfactory device that can be used to examine users’ sense of smell and indicate anosmia.

Delegates try the Hypnagogic Light at The Cell. Photography: Ellie Pinney

Delegates try the Hypnagogic Light at The Cell. Photography: Ellie Pinney

One of the most lively exhibits was serious games company Focus Active Learning, where delegates tried their hand at several board games including The Nutrition game and Infection Control Game. Among other companies in attendance were socially-minded software company uMotif; Imperial’s MSk Lab; the HELIX Centre, a collaboration between the Royal College of Arts and Imperial looking at design in healthcare; Light Eye Mind, who maintain the UK’s only publicly available Hypnagogic Light; and the revolutionary GoodSAM App for first responders.

The biotech showcase was only our morning activity, and Cell-goers went on to join other attendees as they selected their seats in the Hall. At 2pm, the lovely Dara Ó Briain, who kindly gave up his Easter Monday to host the event, took to the stage to welcome our four thousand strong audience to Imagining the Future of Medicine (ImagineMed)!

Welcome to ImagineMed! Photography: Alan Liu

Welcome to ImagineMed! Photography: Alan Liu

Dara, whose wife is a surgeon, is no stranger to being outnumbered by doctors at social gatherings; and, of course, many attendees were doctors (or medical students), but there was also a number of non-medical, even non-scientific, individuals with an intellectual curiosity, eager to hear about the future of healthcare from the people involved in shaping it.

The first session was called Thinking Outside the Box. Hollywood screenwriter Ira Steven Behr once noted, “…usually when we use that cliché, we think outside the box means a new thought. So we can situate ourselves back in the box, but in a somewhat better position”. Following on from this analysis, and in the spirit of ImagineMed, I like to think ‘outside the box’ represents human imagination. The speakers in this session have certainly all put their imagination to good use, and provided important new perspectives in their areas of expertise.

Francis on stage. Photography: Alan Liu

Francis talks about Looking and Seeing. Photography: Alan Liu

First up was cardiothoracic surgeon Francis Wells, who developed a new way to repair mitral valves after being inspired by the medical drawings of Leonardo da Vinci. Francis noted that in an age where everyone is risk averse, it sets the challenge of ‘how do you make new advances?’ He went on to outline three interconnected principles that have helped him overcome this challenge: 1) Ask the right questions. If we begin with the ‘why’, we can then begin to understand the ‘how’ and the ‘what’. 2) Looking and seeing. We are surrounded by visual data all the time, but turning looking into seeing and perceiving is really important.

“Drawing is a line around a think.” – Francis’ daughter

Francis, a keen artist, explained that drawing and thinking are intimately related, and went on to show some of da Vinci’s astonishingly accurate medical drawings. 3) Form and function in nature. All of us are formed by the forces acting upon us; those forces can be genetic, gravitational, osmotic, or emotional, but everything in nature is a diagram of the forces acting upon it. Francis described how in 1515, da Vinci determined the vortex mechanism by which heart valves close, and five hundred years later, a publication in Nature proved him right. Now with imaging technology, many other vortices have been discovered in the heart leading to a whole new way of looking at how the heart functions as it begins to fail.

Jamil talks about building a brain stethoscope. Photography: Alan Liu

Jamil talks about building a brain stethoscope. Photography: Alan Liu

Second speaker of the day was Jamil El-Imad, Chief Scientist at Swiss-based company NeuroPro. Jamil’s background is in software engineering, but his fascination with neuroscience began when his friend began doctoral research at Imperial College five years ago. He and his friend engaged in an extensive discussion one evening, and came up with their hypothesis: if a healthy brain is rhythmic, then an unhealthy brain must behave in a non-rhythmic fashion. They thought that if they attempted some pattern matching to brain signals, they might learn something new. This approach is very similar to using anti-virus software, which looks for any patterns corresponding to known viruses detected in the past. They wanted to build a brain stethoscope!

They decided to first target epilepsy, a disabling condition that affects 1% of the world’s population. When a seizure strikes, physical injuries result from people losing control and hurting themselves as they fall. Jamil and his friend imagined a portable device, or mobile technology, that can monitor the patient’s EEG readings in real time, and give a prediction or warning before a seizure strikes, allowing the patient to lie down comfortably and safely. Their concept for predicting seizures led to the construction of a headset that can be universally used, to building a mobile lab that can speed up research trials, and some amazing visualisation tools to assist diagnosis.

“Computing has become a utility like electricity and water… opening up a whole new space for us in pursuing opportunities in personalised healthcare.” – Jamil

In his post talk Q&A, Jamil noted that the headset technology can be used for a variety of functions – at the moment, they are using it monitoring coma patients.

Mark talks about Caring Outside the Box. Photography: Alan Liu

Mark talks about Caring Outside the Box. Photography: Alan Liu

Our third speaker of the day was consultant neurosurgeon and prehospital care specialist Mark Wilson. Mark used the stories of his Nan, and a man called Dan, to illustrate how different care is appropriate in different contexts. Nan, one sunny summer’s day, surrounded by family, had ‘keeled over’ in their back garden. Mark’s initial reaction to this situation wasn’t to start CPR. “I thought, wow, what a wonderful way to die,” said Mark, to many chuckles from the audience. Dan is a young man who wrapped his car around a tree a few years ago and suffered a brain injury. Patients like Dan might not look that unwell, but there’s a time-critical emergency going on in their head. Dan had a subdural hematoma (a blood clot on the outside of the brain pushing over the brain).

Mark explained that there is a constant loop between what you can find out from extreme physiology and critical care, and his advice to anyone hoping to find something new is to look off the beaten track. People have extreme physiology immediately following an accident, and it’s an area we don’t do much research on firstly, because we’re often not there; and secondly, when we do get there, it’s often dangerous, or it’s raining – it’s not conducive to research. But it’s an area where Mark believes we can make a massive difference. The best time to minimise secondary brain injury is in the first few minutes following an accident, but patients die because we’re not 100% at managing these secondary injuries. He believes if we can intervene at this early stage, outcomes would be much better.

“If you’re not dead when the emergency services arrive, you shouldn’t die.” – Mark

Nan's fine, she's over there! Photography: Alan Liu

Nan’s fine, she’s over there! Photography: Alan Liu

Fortunately, Dan made a good recovery, and was even sitting in the audience with his girlfriend; but at the ward round Mark did that morning, he had 10 patients very similar to Dan. Trauma is the commonest cause of death worldwide in under 45s, and brain injury is the commonest cause of that trauma. Dan went through a system of care: pre-hospital care, emergency care, intensive care, surgery, and then rehab. Mark believes that care is the most valuable thing doctors do, but it doesn’t appear on any tariff, and therefore, what makes good quality of care is difficult to define. Mark said he feels very privileged to be able to care for people with brain injury because is not like other types of injury – it can change a person profoundly, and he is very passionate about maintaining people as they are.

So what happened to Nan? Luckily, she had only fainted, and was also sitting in the audience.

Talented teenagers from Islington Community Theatre. Photography: Alan Liu

Talented teenagers from Islington Community Theatre. Photography: Alan Liu

Final speaker of the first session, Sarah-Jayne Blakemore, brought 25 teenagers with her to illustrate her interesting research on the teenage brain. But they weren’t just any teenagers; they were very talented members of Islington Community Theatre, who created a unique performance. Sarah-Jayne explained that during adolescence, we develop a very strong sense of self, especially social self. Research shows that teenagers feel worse than adults do after being ‘left out’, suggesting that adolescents are hypersensitive to social exclusion. This might also help to explain why some adolescents are more prone to taking risks, especially when they’re with their friends.

Brain-imaging studies have shown what happens in the brain when we think about other people are thinking and feeling – this is called mentalising. The social brain network is involved in this mentalising, and the social brain undergoes significant change during adolescence. When adults and adolescents do the same mentalising tasks, different brain regions are shown to be active. Sarah-Jayne said these findings show that the adolescent brain is not broken or dysfunctional, it is just activating differently.

 

That’s all for the first session.

Thanks to Cell Coordinator Zinah Sorefan for her information on the activities of The Cell.

Check back for #imaginemed Part 2!

Alex

Alexandra Abel is a graduate from Imperial College London and the Royal College of Music. She has a keen interest in both Global Health and Performing Arts. From September, she will be a medical student at Hull York Medical School.

Join her on twitter @alexandraabel

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NCDFREE Bootcamp for Global Health Advocacy, Melbourne

10320451_729359773753428_5023284381833903433_nA mid-week morsel from NCDFREE.

The wrap-up film from their recent Advocacy and Innovation Bootcamp. Bringing together 50 bright young minds from all disciplines the organisation had three outcomes in mind. The first, for the group to mingle, strike friendships and develop new link and maybe collaborations with other sectors. The second was to impart new skills in design and innovation thinking, leadership, public speaking and social entrepreneurship. Finally, NCDFREE wanted something from these bright young minds. NCDFREE sourced their next film and campaign ideas through a challenge-pitching competition.

A fun day for everyone, but enough talk, here’s an insight into the real deal…

 

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Follow Sandro on Twitter.

 

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Interview: Global Health Film-Maker

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This week, we continue our PLOS TGH podcasting – as Melbourne-based Global Health enthusiast Lilli Morgan interviews film-maker Lali Houghton on location, as he films a short film for NCDFREE, GlobalRT and UICC in Lima, Peru.

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