The COVID Vaccine in Under-Served Communities

We are still in the early days of making sure we get the vaccine to all communities in Los Angeles, and are sharing our tool with community groups, churches, and other key stakeholders to meet this goal. WeHealth’s mission is to use digital tools to increase the diversity of clinical trials. Historically clinical trials have been predominantly white, and do not reflect the communities where treatments are typically used. We are seeing this same inequity play out again with vaccine distribution:

It isn’t enough to call out the inequities or even set aside doses for under-served communities. In order to make vaccine distribution truly equitable, we must engage community leaders and empower them to mobilize vaccinations in their community in real-time.

We have partnered with several of these community leaders and, rather than building the tools that we think they need to make this happen, we are asking them what they need. By creating free tools for Angelinos, by Angelinos, we can get LA vaccinated quickly and equitably, and bring this beautiful city back to life. 

If you are interested in working with us or have an idea for a tool or app that would make it easier for you to mobilize your community to vaccinate, let me know at will@wehealth.io

COVID Vaccine Signup Launch

About

We are excited to partner with Vaccinesignup.org to launch a new tool streamlining the process of getting a vaccine appointment in LA County! Check out their post here: https://arye.substack.com/p/vaccine-sign-up-launch

Vaccinesignup is a query tool (@vaccinesignup) that shares the latest vaccine appointments in LA county near you. Since we all know that the LA County appointment finder tool is extremely hard to navigate and fragmented, we ended up building a site that parses vaccine availability in LA County and displays it for easy navigation.

For additional support visit: Vaccinate CA

Sources

• Vaccinate LA County

Contact Us

This project is maintained by WeHealth, who can be reached at support@wehealth.io.

GWI Newsletter – 11/23/20

DESERT STORM MASSACHUSETTS We’re Happy You’re Here. Celebrating the 30th Anniversary, we honor our service and heroism as a community built by Veterans, for Veterans in Massachusetts! New Resources for You Thanks to our community’s inputs, we’ve added three new verified resources for Desert Storm veterans and their families in Massachusetts. View Resources Desert Storm…

How you can fight for health equity

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)

WeHealth’s Mission (VIDEO)

We just posted our explainer video on YouTube. Check it out:

WeHealth Explainer Video

The average rare disease patient searches 7 years for a diagnosis, during which they feel like they are on an island, isolated from communities and doctors.

What if you could help? Not by donating time and money, but by putting your social networks to work, finding patients with just one click and getting them off that island.

WeHealth is built on the idea that we’re all 6 degrees separated from each other (new research indicates that it’s now 4). When you share with your friends, our powerful crowdsourcing tech – developed at MIT – helps accelerate that share across each degree so that it reaches the patients in need.

We provide messages that help patients get diagnosed. We give you tools to share our advocacy message on social media or directly message your friends.

You earn points by completing tasks and recruiting your friends to join the advocacy campaign. You earn bonuses every time your recruits’ complete tasks, so keep them engaged! We track how each share progresses and reward you as it gets closer to the patients in need.

We can’t wait for you to become an advocate on WeHealth!

Searching for a rare disease diagnosis

There’s a great podcast on NPR’s This American Life that I heard recently called “Do These Genes Make Me Look Fatless?” This podcast describes the diagnosis journey of Julie Viles, a wheelchair-bound Iowa mother with almost no muscle mass, who was convinced that she shared a mutation with Olympic sprinter, Priscilla Lopes-Schliep.

Despite the obvious differences between the two (see above picture), Jill saw a similarity that she couldn’t ignore. Says Jill, “It was just unmistakable. It’s like a computer that could analyze a photograph and get a match, and be 100% sure that’s the same shoulder. That’s the same upper arm. I see the same veins. I see them branching this way. You just know. And that’s hard to convey. How could you just know? But I knew we were very likely cut from the same cloth– a very, very, very rare cloth.”

Jill believed that they both had familial partial lipodystrophy (FPL), a disease in which fat is improperly stored, leading to very distinct body types — and often sudden cardiac death in middle age. Many FPL patients never receive the diagnosis that saved Jill and Priscilla’s lives. WeHealth has launched a powerful new social media-driven tool to reach these patients and connect them with life-saving diagnoses and treatments.

Check out our campaign at http://wehealth.co/goals/9/

Curing Rare Disease: What We Have to Gain

30% of children with rare disease will not live to see their 5th birthday.

This reality reflects the inability of our medical system to diagnose and treat children with rare disease. While we have made significant progress, there is clearly a long way to go. In today’s world, where technology advances at a breakneck speed, it is unacceptable that we have been unable to find a way to keep these children alive.

To put this into perspective, I performed some back-of-the-napkin math. According to the CDC (link), 1 in 500 newborns died before their 1^st birthday due to a rare disease. In other words, 0.2% of all children who enter into the world never have a chance to live out their dreams. While 0.2% may seem small, if you apply it to the US population, 700,000 people could have been alive today if we had means to cure their rare disease. To see what we lost out on, I applied these numbers to several professions (numbers from Department of Labor Statistics).

Below, see what these children could have achieved, given the chance:

We need to change the thinking that these diseases are rare.  Imagine the impact if 1,700 police and firefighters suddenly disappeared.  If we suddenly lost 8,000 doctors and nurses or 85 professional actors and musicians.  God forbid a congressman disappears.  Can you imagine the outcry?

These children have so much to offer the world.  We just need to give them the chance.

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 “3^rd 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! The Lexington Herald Ledger created a cool graphic that connects Kentucky celebs to Mr. Bacon.

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.