Improving Long-term Healthcare with Crowdfunded Community Partnership

 

Kristen and Susan

Collaboration and community are at the heart of bringing research to life in ways that make a real difference to people’s lives, specially when it comes to advances in healthcare. So this time we give a shout out to an interesting crowdfunding project that was launched yesterday to try and do just that:

By Chaitenya Razdan, Co-Founder and CEO, Care + Wear

Everyone has had a close friend or family member undergo some type of medical treatment and witnessed just how taxing it is; lives are completely altered for both the patient and their caretakers. Having experienced it first hand, Susan, Caroline and I combined our backgrounds to create a functional and fashionable treatment accessory that provides protection while increasing comfort during treatment.  We began with a simple concept for patients with PICC lines – the Band.

Through the development of the Band, Care + Wear was born.

PICC lines (Peripherally Inserted Central Catheters) are used to administer long-term intravenous medications like chemotherapy, IV antibiotics, and TPN nutrition. Today, over 6 million are inserted annually and this number is growing quickly.

We knew that if we were going to reach as many patients as possible we would need to inspire a community effort.   First, we put together an experienced advisory board consisting of doctors, nurses, strategic growth and marketing professionals and successful entrepreneurs who have each dedicated countless hours to helping build Care + Wear. Then, we reached out to the industry’s leading foundations and now proudly call the American Cancer Society, F Cancer and the Tyler Robinson Foundation partners.

We have made significant progress since the Band was developed this Spring thanks to our advisors, partner foundations and most importantly the patients.  We’ve heard countless stories of how the Band would have, and could improve a patient’s journey through long-term medical care.  We are more inspired to bring our dream to life every day.

But in order to bring the Band to life, we needed a platform to reach more patients around the country, their friends and family, caretakers, nurses, doctors and colleagues and to spread the word. We not only want people to know that there is a product out there but also want to raise awareness for the community as a whole.

Crowdfunding gives Care + Wear an avenue to spread awareness to those living with PICC lines and their own communities. We have been overwhelmed with the excitement around the Band and are looking forward to making a difference.

Today we are proud to announce the official launch of Care + Wear. With cutting-edge designs and features, we hope to be able to help comfort, protect and inspire patients with fashionable medical accessories that also help support our foundation partners.

All the funds pledged will help us manufacture and distribute the first Bands to hospitals and patients, with a portion being donated to our foundation partners. Visit our Indiegogo campaign page to support us!

Receiving long-term medical treatments is an arduous process that often can be debilitating and leave you weak and without hope. It’s about time that we did something to help patients and their families. So join us, this is only the beginning.

If you’re interested in the subject, make sure to join our Crowdfunding Group on Mendeley and let us know what you think!

Crowdfunding to develop healthcare matching technology

Utilize health

A technology platform is helping to match paraplegic patients and those with neurological disabilities with the best healthcare providers available. They now want to use crowdfunding to develop this service even further, and their Indiegogo campaign has already reached over half of their initial $60,000 goal. Here’s their story, which began over 10 years ago…

By Jessica Harthcock, Founder and CEO of Utilize Health

I was 17 when I was paralyzed practicing gymnastics with the goal of bettering my skills for the springboard diving team. From the beginning, my prognosis was very grim; doctors said I would never regain function. This was certainly not what I thought my life would look like at age 17. My family and I wanted options – we wanted a treatment or therapy we could TRY. So for the next several years, my family and I traveled in search of highly specialized rehabilitation treatments. We went everywhere – Mayo Clinic, Vanderbilt, facilities in Chicago, Miami and Louisville. I tried anything and everything I could get my hands (or legs) on. I tried Lokomat therapy, e-stem, underwater treadmill training, vestibular therapy, hippo therapy (and the list goes on). After several years of hard work, I learned to walk again. Today, I still don’t have sensation below T3, but I walk by sight (and with the help of my service dog, Ozzie). It’s been a journey, one that’s never really over.

Ozzie 2

This experience has taught me a lot about myself, but also about the gaps in the healthcare system. It was extremely difficult to learn about all of the existing and new treatments. Googling only gets one so far. Once I found a treatment or therapy I wanted to try, no one could tell me where to go to get it. Locating a facility with a particular therapy sometimes took months. After experiencing difficulties in finding resources and therapies, I knew there had to be an easier way, so I vowed to create a tool that could help other patients find the resources they needed without wasting time, energy and financial resources. Thus, Utilize Health was born.

Utilize Health is a platform that matches patients with neurological disabilities to the therapies and facilities they need to maximize their potential for recovery. Think OpenTable or Hotels.com, but for patients and facilities/therapies.

My husband and I started the company in May 2013. We were accepted into a top-ranked business accelerator program called Jumpstart Foundry. Through the program, we developed the idea into a sustainable business.

Ozzie 1

In December of 2013, Utilize Health was very fortunate to unexpectedly receive national press from USA Today. Patients, families, facilities and equipment manufacturers all started reaching out to see if they could use our service. But there was a BIG problem… the website didn’t exist yet. We were in the process of raising funds to build the web application.

I lost sleep… a lot of sleep. What do we do? People need this and they need it NOW. Patients don’t want to wait. Every email, phone call, and social media request seemed more urgent than the next.

The Utilize Health team rallied. We created a plan. We started to manually match patients to therapies and facilities across the country. Manual matching is completed by essentially looking at spreadsheets and other paper databases. Manual matching is time consuming. It takes anywhere from 7-10 days, sometimes longer.

In April, the Utilize Health team had successfully matched more than 100 patients to therapies and facilities across the country. Patients and their loved ones were thrilled with the resources Utilize Health was able to provide them.

Unfortunately, there are still patients and their families on the waitlist waiting to be matched. More patients sign up daily. With a wait list a mile long, we need to automate the matching process. This is when we decided to ask the public for help through crowdfunding.

Crowdfunding has given us an opportunity to gain support within the community. In less than 48 hours, we raised more than $20,000. We were completely blown away by people’s generosity.

https://www.indiegogo.com/project/utilize-health-matching-patients-to-the-care-they-need/embedded

All the funds pledged will do directly towards the development and creation of the web application to automate the matching process. Perks and prizes are offered such as Utilize Health swag and patient advocate subscriptions. Our campaign is live until August 22nd. Click on the link below to check out the campaign.

We are so thankful to everyone who has contributed thus far. We truly hope to make an impact for those individuals who have neurological conditions. As we say at Utilize Health, No One Walks Alone.

If you’re interested in the subject, why not join the Mendeley Crowdfunding group, or let us know in the comments below if you have any experiences to share with the community!

 

 

 

Crowdfunding Healthcare Logistics

 

Plushcare

 

UC Berkeley and health entrepreneurs use crowdfunding and technology to bring innovative solutions to healthcare, and do some good in the process:

By Ryan McQuaid, Founder of PlushCare

I’ve observed over the past 3-4 years that technologists want doctors to do more for less or they want to throw an app or device at patients to make them healthy – neither of which are sustainable in the long term. I believe that both the doctor and the patient need to be engaged and rewarded to have a successful partnership in a patient’s care plan.

That’s why I started PlushCare in a lean startup curriculum sponsored by Professor Kurt Beyer at UC Berkeley’s Haas School of Business. The final assignment was to market-test PlushCare on Indiegogo, which is an incredible tool to quickly and cheaply validate an idea and understand your customers (who they are, willingness to pay, why they want your service, do they want a variation, etc). This project is a perfect example of how our educational system has evolved from classroom learning to experiential learning.

With PlushCare, our Stanford-trained physicians maintain a relationship with their patients via email, phone or video chat for a very low fee (currently offered at $80 per year on Indiegogo). Through mobile technology, we estimate that we can diagnose and treat (prescribing medication when necessary) 70% of the reasons patients go into the physician office. For the remaining 30%, we will consult with the patient’s primary care provider directly prior to the patient’s arrival. In addition, we can provide referrals to laboratories and specialists, and play a more pro-active role in our patients’ health. For example, the average person looks at his or her phone 150 times per day; I believe we can help send the right message at the right time to keep our patients on-track with their wellness goals.

In the long-term, we envision ourselves as the logistics provider for healthcare. Come to us and we will guide you seamlessly through the health system and efficiently manage healthcare resources. For example, our analytics may be certain that you have a sinus infection and we will send an antibiotic to you at your office without the intervention of a human resource, or we may send you to a nearby mid level practitioner at a Walgreens or CVS healthcare clinic. Another example is utilizing temporary or permanent slacks in supply to fulfil excess demand in other geographic locations. In San Francisco, there is deficit in paediatricians, but with PlushCare we can help bring the supply and demand curves to equilibrium by utilizing paediatricians in the suburbs.

Furthermore, we want to make a positive impact on a global scale. Today, a child dies every 20 seconds from a preventable disease because he or she lacks the access to life saving immunizations that keep children healthy. That’s why for every PlushCare sign-up, we are providing one child a lifetime of immunity. Join our movement to increase access, convenience and affordability. #gethealthgivehealth

Cutting-edge research into Parkinson’s turns to Crowdfunding

 

inthistogether1

Here at Mendeley we’re always interested in new ways that technology and social media can facilitate important research. Crowdfunding is one booming area that certainly brings those elements together, often in favour of some pretty awesome and worthy causes. So we thought we’d invite the folks at Indiegogo, the world’s largest crowdfunding platform, to highlight a research-based campaign that is making them excited at the moment. The one they came back with is called “we’re in this together” and broke the record for most successful health campaign in raising funds for world-class care and innovative research into Parkinson’s Disease:

By: Chelsea E.M. Kasai, Director of Development at the Parkinson’s Institute and Clinical Center

Two and a half decades ago, a dedicated group of Parkinson’s disease experts set out to create a better way to research and provide care for Parkinson’s disease. We would go beyond your standard doctor-patient relationship. Patients would become partners in developing their care plans, improving their quality of life, and discovering new strategies to confront and manage their disease. Compassionate care would work

hand-in-hand with cutting-edge research to seek answers, develop new therapies and treatments, and ultimately work toward a cure. Our result was the Parkinson’s Institute and Clinical Center.

Two months ago, the Parkinson’s Institute launched our very first crowdfunding campaign on Indiegogo with Silicon Valley venture capitalist Bill Draper and his family. Bill’s wife Phyllis is living with Parkinson’s disease.

We are always looking for new and creative ways to attract funding and further diversify our development portfolio. Caring for people with Parkinson’s does not fit neatly into today’s healthcare economics. It takes much more than an assembly line approach and 15-minute consultation to provide appropriate and impactful care. Philanthropy ensures that when it comes to care—no sacrifice is made and no corner is cut. Government and foundation research grants only cover a modest portion of the expenses associated with our Institute’s remarkable science. Philanthropy drives the pace at which our Laboratory and Clinical Researchers are able to pursue their work.

Crowdfunding both intrigues and excites us. Our Indiegogo campaign has allowed us to amplify donor investments, connect with and engage new supporters, and explore an innovative and cutting-edge vehicle for philanthropy, community building, and learning.

We know that when a loved one is living with Parkinson’s, the entire family is living with the disease. So for this very special campaign, we asked Bill Draper and his family to share their story with the world. We launched our Indiegogo campaign on #GivingTuesday with a $100,000 dollar-for-dollar match from The Draper Foundation. In less than 4 days we raised over $200,000. Our early campaign success inspired a second matching fund from Parkinson’s Institute Board Member Peter Nosler and his wife Julie Veitch. We’ve now raised over half a million dollars—Indiegogo’s Most Funded Health Campaign to-date.

In addition to Bill’s story and video, our campaign has featured his son Tim Draper, fellow venture capitalist, and founder of Draper University and the BizWorld Foundation; daughter Polly Draper, actress, writer, producer, and director; and granddaughter Jesse Draper, actress, and creator and host of The Valley Girl Show.

Campaign perks include Photo Prints from the Schuele Lab (Dr. Birgitt Schuele is our Program Director of Gene Discovery and Stem Cell Modeling), Virtual Research Updates with our best and brightest minds in science, and an Espresso and History Lesson with Dr. Bill Langston, Parkinson’s Institute Founder and CEO (Dr. Langston gained national and international recognition in the 1980s for the discovery of the link between a tainted “synthetic heroin” and Parkinsonism—MPTP).

More about the Parkinson’s Institute and Clinical Center

Parkinson’s Institute and Clinical Center is America’s only independent non-profit organization combining world-class care, Clinical Research, and Laboratory Research for Parkinson’s disease under one roof. By virtue of our design, we are uniquely equipped to provide the best care, accelerate promising science, and perhaps most important—integrate the two and everything in between. It’s what we now call Our Virtuous Circle and people living with Parkinson’s disease and their loved ones are at the center of all that we do. Learn more by visiting ThePI.org.

inthistogether2

If you’d like to support this campaign, you can visit and share their page on Indiegogo. We’d also love to hear about your own experiences of crowdfunding your research, so either leave a comment below or join the discussion on our Crowdfunding group on Mendeley.

Technology and Research Mendeley Masterclass

©Tom Atkinson 2013 - www.r3digital.co.uk
©Tom Atkinson 2013

Last month we saw another edition of the global extravaganza that is Social Media Week. This time around there were over 1000 events and 25,000 attendees in 8 cities around the globe. The theme for this year was “Open & Connected” which is pretty much a perfect fit for the Mendeley philosophy. So we thought it would be great to host an event in the London SMW Hub about how technology is changing the way we conduct and fund research, how researchers interact, discover content and share their findings, as well as how the non-academic public can get involved and make a real different through citizen science initiatives.

Our Masterclass was streamed live and proved to be one of the most popular events of the week, with hundreds of people tuning in and sending their own questions.

Mendeley Co-founder and President Jan Reichelt kicked off the series of lightning presentations by explaining how Mendeley can help researchers organise their papers, but also how it went far beyond that. “Research is an inherently social activity, and Mendeley is an environment starting with productivity going over into collaboration, and that also crucially captures the social context going on around that research.”

Rachel Greene from JoVE challenged researchers to “stop reading and start watching,” explaining how the majority of the time scientists failed to accurately replicate the findings of key studies. She believes that technologies such as the one used in their peer-reviewed Journal of Visualized Experiments are much more suited for that purpose than traditional print, and can therefore dramatically increase reproducibility and the pace of scientific discovery.

“In the past everything was recorded on paper, but current science is very digital,” says IJsbrand Jan Aalbersberg from Elsevier’s Article of the Future project, which aims to improve scientific communication in all its rich facets. “All the records are digital, all the capturing of scientific data is digital, and the communication of that information of course is also digital. However the traditional publishers have not yet adapted to that, what they usually do is flatten the multidimensional, rich research that an author has created into a two-dimensional paper of text and images.” He gave insight into some tantalizing possibilities, including the ability to run variations of some experiments – in computer science for example – within the parameters of the article itself, making it a living, evolving piece of collaborative research.

Nicolai Humphreys from The Lancet told of how the meaning of the journal’s name came from the fact that “A lancet can be an arched window to let light in and can also be a sharp surgical instrument to cut out the dross” and upon founding the journal in 1823 Thomas Wakley stated his intention that the publication should serve both those functions. Fast-forward nearly 200 years and Nicolai is part of the team that is using technology to cut out the dross and make academic publishing more dynamic and cutting edge.

Emma Cooper described the journey that took their digital amusements company Team Cooper to developing a Facebook game in conjunction with The Sainsbury Laboratory to help harness the brainpower of citizen scientists to tackle Ash Dieback disease. Quoting Dr Dan MacLean, who approached them about building the game with their data, “humans are smart and humorous, and we love games.” The key to the success of Fraxinus is the human ability to recognise patterns, and this proved really addictive with players (over 38,000 in the first month), who spend 20 minutes on average playing the game, where the average tends to be around 5-10 minutes.

That is what Robert Simpson from citizen science web portal Zooniverse calls “cognitive surplus,” which describes the vast amount of time that we collectively spend on activities such as watching TV. “The human race spends 16 years every hour playing Angry Birds every hour. There’s a lot of brainpower out there and what we try to do is take that brainpower and make it more useful to researchers.” The team at Zooniverse works with researchers to design sites that take their data and presents it into a format that will let the crowd help them to achieve their objectives. In the case of Snapshot Serengeti, for example, this meant classifying the millions of pictures taken over 2 years by camera traps in Tanzania to provide new insight into wildlife dynamics.

“These days with modern technology Citizen Science is becoming a fresh new hot subject in science,” says Margaret Gold of Citizen Cyberlab, which is leveraging the web, mobile phones and other tools and platforms to enable crowd-sourced scientific research. “We give people across the globe an interactive means to either help with the collection of data or the processing of data, pattern recognition and so forth, and all this makes a very genuine contribution towards science.”

Dr Rayna Stamboliyska, a Research Fellow and Digital Content Coordinator at the Centre for Research and Interdisciplinarity in Paris, believes that technology can be used to bring research into primary schools, and that “we can change the world many kids at a time.” In these programs, PhD fellows work with school children to develop research projects, leveraging and incorporating various technologies and social media. “This not only engages them in the STEM curricula at a young age, but it’s a really gender neutral policy, so we’re addressing the problem of having so few women in science.”

But ground-breaking research often comes across the stumbling block that is lack of funding, and this is where Liz Wald from Indiegogo believes that crowdfunding can help scientists. “it’s really about getting rid of gatekeepers, knocking down barriers and taking ideas right to the crowd,” she said as she went through a few of the projects that were crowdfunded through Indiegogo, such as Kite Patch (a patch that lets people avoid mosquito bites) and uBiome (where you sent off swabs of your bacteria to them so that they could let you know more about yourself and also help the wider project to sequence the Microbiome). The message was that people will not only fund cool and useful gadgets, but all forms of science as long as you tell a good story.

If you missed it on the day don’t worry, all the presentations are on the Mendeley YouTube Channel, so you can watch them any time and let us know what you think! There are also some cool pictures of the day available on our Flickr page, we had a great time and thanks again to all our speakers and community!

 

 

 

Don’t Miss the Technology and Research Mendeley Masterclass at Social Media Week!

SMW London badge v2

This Thursday the 26th September, Mendeley’s Co-founder Jan Reichelt will get together with 8 other innovators from the Open Knowledge Foundation, Zooniverse, Elsevier, Indiegogo, Team Cooper, The Lancet, JoVE and the Mobile Collective to discuss the many ways that technology can change, facilitate and improve things for researchers everywhere.

From “The Article of the Future” and the power of crowdfunding to enable research, to videos that enhance reproducibility and games that harness the power of crowds to solve some of the world’s most difficult scientific challenges, there’s certainly going to be a lot of food for thought…

We’re going to be right at the heart of all the activity in Social Media HQ which will also host events by the likes of Facebook, Nokia, Pinterest, Twitter and Google to name but a few. Spaces at the venue are extremely limited and you have to hold a VIP Pass to attend, but you can watch the event for free and live from wherever you are by following the live streaming link.

If you have any questions, comments or thoughts you’d like to put to the panel, do get in touch! You can leave a comment here, email me on alice.bonasio@mendeley.com  or Tweet using the hashtag #smwSciTech

How is Technology Changing Research? Let’s Find Out!

SMW London badge v2

Social Media Week London will soon be upon us and Mendeley is really excited to be hosting a Masterclass in the heart of Covent Garden. This year’s SMW theme is “Open and Connected” and  that’s literally what Mendeley is all about. So we thought we’d bring together a few like-minded people to talk about how social media and technology are changing the way we research and what this means not only for the academic community, but for everybody.

Research is not about a “walled garden” any more. It’s global, open and collaborative (the fact that Mendeley just reached 2.5 million users proves that) If you’re a student, have a professional interest in science or academia, are one of the millions of people who have contributed in some way to a citizen science project or thought about supporting research through crowdfunding, then you’re part of this story. And if you aren’t yet, then chances are that you soon will be. People want to participate in science, creating communities around interesting projects and helping to advance the pace of discovery in the process, and now they can even do this by playing Facebook games.

The dynamic format of the event will have 9 high-profile international speakers presenting their ideas in 5-minute PechaKucha-style presentations followed by a 45-minute open discussion between the panellists and the audience (both in the venue and online) mediated by Nicolai Humphreys, Web Editor of the Lancet. We have a very impressive cross-section line-up, and they’ll explore, from a variety of angles, how technology and social media are enabling scientific research and making science more open for everyone. We will look at how games can leverage the brainpower of millions of citizen scientists, how crowdfunding initiatives have helped raise funds for finding new cures for cancer, and how global collaborative platforms are helping to bring together researchers to help solve some of the biggest problems facing us today.

The space in the venue is limited to only few guests and VIP pass holders, but we’ll be streaming everything live, so wherever you are in the world you can watch the sessions and send in your comments.

So if you have a question (whether it’s for on of the panelists or a general issue about technology and research you’d like to explore) get in touch via Twitter using the hashtag #smwSciTech or send an email to alice.bonasio@mendeley.com and we’ll try our best to include it!

See you there!

Event Details

Social Science Masterclass: How Technology is Changing Research

Thursday 26th September 2013

11:00am to 1:00pm

Covent Garden, London

Speakers:

Jan Reichelt, President and Co-Founder at Mendeley, dubbed the “Facebook for Scientists” – a collaboration platform with 2.5 million users worldwide that also offers researchers workflow and content management tools to accelerate the pace of scientific discovery. In April 2013 Mendeley was acquired by Elsevier, one of the world’s largest scientific publishers

Nicolai Humphreys Web Editor, The Lancet, one the world’s best known, oldest and most respected medical journals, founded in 1823 and published by Elsevier since 1991

Rachel Greene – Director of Marketing at JoVE (Journal of Visualized Experiments) the first peer-reviewed and internationally recognised Scientific Journal that uses video content

IJsbrand Jan Aalbersberg Senior Vice President Journal and Content Technology at Elsevier . He heads the Article of the Future project, which is an initiative that looks at how the traditional paper/pdf based article will evolve to accommodate the wealth of multimedia content that researchers will increasingly rely upon to build scholarly conversation

Margaret Gold Director and Co-Founder of the Mobile Collective,which includes projects such as Citizen Cyberlab, looking to build tools and platforms for citizen science as well as collaborative environments and software tools that stimulate creative learning.

Emma Cooper, Business Development Director at Team Cooper, the developers of Facebook game Fraxinus which harnesses the power of citizen science to find a cure for ash dieback disease

Liz Wald, Head of International at Indiegogo, the largest crowdfunding platform on the web which has successfully enabled scientific research via projects such as uBiome and iCancer which raised funds as well as awareness through their highly successful campaigns.

Rayna Stamboliyska, Board Member of the Open Knowledge Foundation France, working at the Centre for Research and Interdisciplinarity in Paris which focuses on open digital tools for science and has prototyped a platform for citizen science projects in synthetic biology.

Robert Simpson, Researcher and Developer at Zooniverse  (a platform that connects citizen scientists with projects they can contribute to)