How you can fight for health equity

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WeHealth empowers patients to reach into their own communities and connect their peers with health resources. As they share, we show a map of how that message has spread through their network, so they can visualize when they help a patient, even if that patient is a friend of a friend of a friend. This makes advocacy more accessible, enabling a large group of people to share clinical trial info in a short period of time and reach underserved patients.

We are launching a campaign to reach African-American, Asian, and Hispanic Diabetics. Check out our how-to video below to see how it all works!

WeHealth Mission – YOUTUBE (3min)

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Racing Against Death

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Photo Credit: E. Jason Wambsgans / Chicago Tribune

Laine VanHoutan, a posterchild for kids around the world fighting Batten Disease, died at the tender age of 12 – but not before helping usher in the first treatment for her disease, one that may help prevent a similar fate for her peers.

Laine and 64 children who contributed to the clinical trial for this new treatment, Brineura, are true heroes. But they also highlight a tragedy in medicine. 95% of rare diseases are untreated – Batten Disease has a 100% fatality rate with an average lifespan of just 12 years old – and many rare diseases are not diagnosed until irreversible damage sets in.

Moreover, due to its rarity – Batten Disease only affects 2 in 100,000 kids – it is very difficult to find enough patients just to test whether a promising drug works. If we can figure out how to diagnose children with rare disease earlier before irreversible damage sets in, we can potentially save children like Laine.

I’ve always disliked the term “Rare Disease” because, as a whole, these patients are everywhere. Do you know somebody with rare disease? How about somebody who is left handed? 1 in 10 people has a rare disease. That’s the exact same proportion that is left handed! There are over 7,000 rare diseases so, while each one may be rare on it own, many of us are silently fighting a rare disease.

The good news: You can help.

We started WeHealth to tackle some of the issues facing Laine and others with rare disease. A major issue is the diagnosis problem. Many rare diseases begin showing symptoms long before patients end up in the hospital. For instance, children with Batten Disease may exhibit learning impairment, clumsiness, and seizures years before a diagnosis.

We work with advocacy groups to identify these symptoms and ask you get them out on your social networks. You may have friends whose kid matches these symptoms or you may know a healthcare worker who sees lots of these kids but hasn’t heard of Batten Disease (with 7,000 rare diseases, it is very common for this to be the case).

Sharing this information can easily save a life. Check out our new campaign to help rare disease patients and help with a few clicks:

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Incentivizing Social Search

The world is smaller than it has ever been. This observation reflects how the Internet and social media have strengthened our ability to connect with people and maintain those connections regardless of our physical distance. We have used social media to revive dormant friendships, make friends on the other side of the world, and expand our networks far beyond what was once possible.

Social media has also enabled us to document our connections, resulting in a “virtual rolodex”. We now have the ability to find almost anybody in the world through the mutual friends and connections that we have on Facebook, Twitter, LinkedIn, and Instagram, among others.

Stanley Milgram’s “Six Degrees of Separation” law states that we are between 5 and 6 connections removed from anybody in the world. So if my friend is 1 degree removed, and my friends friend is 2 degrees removed, I am only 3-4 more degrees removed from connecting with anybody in the entire world. This works because our networks grow exponentially with distance. In other words, if I have 100 friends, and each of those friends has 100 friends, my “2nd degree” number of connections is 10,000. My “3rd degree number of connections is 10,000 X 100 = 1,000,000. There will be overlapping of friends, but it doesn’t take long to get into a number in the billions, which covers the rest of the world.

To have some fun with this idea, play the “Six Degrees of Kevin Bacon” game (link), which can connect Kevin Bacon to any actor in the world where each degree of connection is defined by two actors acting in the same movie together. I bet you can’t find an actor more than 6 degrees removed from Kevin Bacon! Also check out this graphic from 3QuarksDaily, which connects former President G.W. Bush with some of his foreign enemies based on shared honorary degrees.bush6degrees

While this is a cool phenomenon, how can we put it to use? Manuel Cebrian is a leading expert on using our social networks to find people and solve problems. He found that we can get people to participate in social search to find extremely hard-to-find targets by providing the right incentives. And the solution, while not immediately obvious, is elegantly simple and powerful! Read his story about how these elegant incentives create a powerful search tool that works by crowdsourcing people’s social networks (link).

We are inspired by Manuel’s work and are applying the principles of his research to find rare disease patients and connect them with advocacy groups and research opportunities. Hope you enjoy the read!

A Day in the Life of a Rare Disease Patient: Research

“I would be happy to take part in any research if it means future generations do not suffer.” – Patient, Ehlers- Danlos syndrome.

“Medical staff (when I asked) were either dismissive or were not aware of current research…” – Patient, mal de debarquement syndrome.

“There still isn’t enough being done to let people know there is a research project going on. I would not have known about the research projects related to my conditions if I had not been intensely proactive looking for it.” – Patient, spontaneous coronary artery dissection.

“Social media is being used as a tool for recruitment, and also through the internet there is opportunity for people to be proactive and find research in which they would be eligible to participate.” – Patient, Cowden’s syndrome.

Rare Disease UK published the results of a survey to 1203 individuals affected by a rare disease in January (link) to understand their realities. I will post summaries of four sections in the report: Patient Empowerment, Diagnosis, the Undiagnosed, and Research.

95% of rare diseases lack an approved treatment. That leaves an enormous unmet need for research within the rare disease community. Fortunately rare disease patients overwhelmingly support and participate in research. 80% of survey respondents indicated that they would participate in research, and another 15% were unsure, with only 4% stating that they would not be interested.

While enthusiasm for research is high, knowledge about research opportunities is very low, with over half of respondents indicating that they felt uninformed. Another half of respondents said that research awareness has improved over the past five years, much of that having to do with social media. However, patients are still often on their own when it comes to finding research opportunities.

“To find details about research you have to know where to look. Promotion and interpretation of the research relies on a few individuals and organisations.” – Patient, hereditary spastic paraplegia.

Our core mission at WeHealth is to provide a more effective way for getting these research opportunities to patients. Our platform engages the crowd – or YOU – to accomplish this. We have built an incentive structure in which you can get points for connecting a target patient with a research opportunity OR for sharing the message to a friend who successfully makes that connection. This method is a form of social search called “referral-based crowdsourcing”, and it has proven very effective for finding rare “needle in a haystack” targets.

WeHealth makes it incredibly easy for everybody to participate in advocacy. By simply sharing messages with your friends, you can become an advocate and help these patients in a very real way.

View other articles in the “Day In The Life” series: Patient Empowerment,Diagnosis, the Undiagnosed, and Research.

A Day in the Life of a Rare Disease Patient: The Undiagnosed

“I have found that as soon as other conditions are ruled out the wait to get a diagnosis is painfully slow. With anything that requires uncommon tests or treatment the funding is not there and so we are pushed to one side and made to wait…” – Patient with an undiagnosed condition.

“Health professionals seem unsure how to help me as they seem reluctant to prescribe things when they are unsure of the underlying condition. I have a local physiotherapist but had to wait 6 months for this service. I have had to fund my wheelchair and mobility needs myself and research my own condition.” – Patient with an undiagnosed condition.

Rare Disease UK published the results of a survey to 1203 individuals affected by a rare disease in January (link) to understand their realities. I will post summaries of four sections in the report: Patient Empowerment, Diagnosis, the Undiagnosed, and Research.

As we explored in the Diagnosis article, the average rare disease sufferer waits 4 years to receive the correct diagnosis. There is a huge emotional impact to not having a diagnosis, and 87% of undiagnosed respondents in the survey reported not being provided enough information and support during the diagnosis process.

Patients report feeling “isolated on an island” with debilitating symptoms but nobody to help them cope. In the absence of a disease name, there is no category, and therefore no community to provide guidance to these patients and recommend treatments. As a result, the undiagnosed are left to find they way alone as their unnamed disease continues to do damage.

Receiving adequate care becomes very difficult without diagnosis. 80% of respondents indicated that lack of diagnosis had been a barrier to receiving care. Whereas a diagnosis can guide treatment and help providers anticipate associated conditions, these patients are left moving from doctor to doctor – an average of 10 total for respondents who are presently undiagnosed – receiving endless rounds of tests and shot-in-the-dark treatments.

Crowdsourcing platforms CrowdMed and Sermo present the symptoms of undiagnosed patients to large networks of doctors who work toward solving these medical mysteries. These platforms can be very effective in finding diagnoses for these undiagnosed patients.

WeHealth is applying crowdsourcing from the opposite direction. We are working with the advocacy groups and communities that represent underdiagnosed diseases and using crowdsourcing to look for undiagnosed patients who fit their symptom profile. We know that these undiagnosed patients are out there. We can use crowdsourcing to find them and end the hardship of being undiagnosed.

View other articles in the “Day In The Life” series: Patient Empowerment, Diagnosis, the Undiagnosed, and Research.

The Casualties of Ignoring Rare

People are dying due to misdiagnoses. That is not new news and is no secret – especially to those in the rare disease community – but I was reminded of the fact in an article published this week.

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The article tells the story of a 21-year-old mom, Hollie (pictured), who died last Sunday from Langerhans Cell Histiocytosis (LCH), a cancer-causing disease in which white blood cells are overproduced. Despite displaying an extreme thirst, “gulping pints of water every five minutes,” and chronic fatigue – two hallmark symptoms of LCH – doctors diagnosed her with depression and sent her off.

It wasn’t until Hollie fainted and a brain tumor was discovered, that she was finally diagnosed with LCH. By then it was too late, and she died after a year of chemotherapy. When diagnosed early enough, over 90% of LCH sufferers survive the disease.

When I speak with advocates for rare diseases, they tell me about how they wish they knew what they know now at the onset of their symptoms. At worst, a correct diagnosis provides peace of mind and community with fellow sufferers. At best, getting diagnosed earlier can stop disease progression and save lives.

At WeHealth, we are working to strengthen that community by using the power of our social networks to spread information, such as the symptoms of LCH, and get it to those in need before it is too late.

Rare diseases are often misunderstood by outsiders and misdiagnosed by physicians, so it is important that we get the word out. Knowledge, in this case, can SAVE LIVES.