LYME INNOVATION HACKATHON!

THIS is good news, folks... Also, it's one of the best articles I've read about lyme in a very long time...

[urlhttp://www.huffingtonpost.com/david-michael-conner/hacking-for-a-cure-innova_b_10569656.html

Excerpt:
"Enter the Lyme Innovation hackathon. This past weekend, Harvard Medical School’s Dean Center for Tickborne Illness, in partnership with the VA Center for Innovation, MIT Hacking Medicine, the open Medicine Institute, and sponsored by the Bay Area Lyme Foundation, will convene a three-day “hackathon.” This event calls on the public “to solve critical prevention, diagnostic, and treatment and rehabilitation challenges facing the Lyme disease field by bringing together diverse researchers and scientists.”"

"Before the event, I spoke with Andreas M. Kogelnik, M.D., Ph.D., director of the open Medical Institute, about why this hackathon is necessary and what he hopes for it to accomplish.

What is the hackathon, and what do you want to accomplish with it?

I’m actually an infectious disease doctor, but I’m also a computer science data nerd. I was at Stanford for about eight years chomping away at ‘How do we define illnesses on a molecular level?’ because it turns out we don’t do that very well in clinical medicine. Also, how do we use molecular testing of all sorts to start to do that?

As I was seeing patients and doing research on those patients, I ran headlong into chronic fatigue syndrome, which was my first long-term exposure with any chronic illness. It opened my eyes up to this whole, for lack of a better word, diaspora of chronic neuro-immune illnesses — I put Lyme in that bucket.

There’s this whole host of conditions that are either triggered by an infection, as they are themselves an infection, like Lyme or Bartonella. Or we just don’t even know yet... people think there’s an autoimmune component. But all of them circle around the immune system and metabolism and some of them around pathogens [that cause] major dysfunction at multiple levels of the body, becoming chronic in many cases.

So I was fascinated by this, and I said... if there’s any patient group that needs analysis and redefinition more, this is one of them. I started meeting a lot of people in the field and getting into the controversies with different conditions, be it Lyme, chronic fatigue or other related conditions. I realized there was this huge gap between what is happening to patients and what should be happening in the medical field.

It was a story that, to me, represented some of the critical breakdowns in our healthcare system in terms of not just patient suffering, but economically and outcome-wise, that we are not dealing with these illnesses properly. It costs patients a lot and it costs society a lot. So we started asking how we can drive toward a better answer, and the obvious answer to me was to use more and better data.

So we started the open Medicine Institute out of Stanford with that in mind, and one of the goals was to create systems by which we can easily collect data directly from patients or through any other source, tying back to new biotechnologies that we can use to measure the immune system or different pathogens, or measure metabolically what’s going on in the body. In doing so, we started connecting different Lyme doctors, academic centers and so forth. We are looking at doing studies with them, working with people at Stanford, Mass General and the community sites. We all came to an accord around the need to collect data.

I give talks around the country, and one of my tag lines is, “As physicians, we’re data stupid.” We don’t have enough data around our patients in many patients, particularly around complex illnesses. I would put Lyme front and center as one of those cases. People stand on a lot of pedestals talking about stuff when they really don’t have much data about it, on all sides of the fence. A lot of positions are determined by where people stand on their thought processes. We need more, better data on these things... and put aside all this political nonsense.

Patients are sick and there’s no question that a lot of them are really, really sick and that needs to be addressed.

So the hackathon is a response to that. ]b]The OMI embraces it, and there’s White House support for it, Mass General and other places. So part of what we’re trying to do with the hackathon, with OMI, and with multiple medical disciplines in general, is to start to raise some awareness and better data, to get people to start thinking outside the box in medicine and particularly around Lyme disease.

It turns out that there’s a tremendous number of stones that have not been looked under. It hasn’t happened in a lot of conditions, and I think that patient activism and engagement with research in particular is really coming into its own and driving transparency in medicine — but we’ve got a long way to go. So the hackathon is one small step in getting on that road and hopefully getting a lot of patients a lot better information."

(There is more after the section above and then this paragraph which is worth hi lighting:)

"Last month, there was a Lyme science and policy forum on Capitol Hill. While the room was full, the event didn’t attract a single congressional staffer. The forum ended up being a lot of preaching to the choir — a choir of patients with severe, progressive Lyme disease who traveled to Washington to ask for greater investment in research. So they would find it encouraging that the White House and Department of Veterans Affairs are invested in the hackathon.

In what way is the White House supporting the hackathon? Is it a vote-of-confidence type of support or is the support financial?"

(There is much much more to the article)

-p

The Hackathon Presentations can be found at: www.facebook.com/lymeinnovation

The video posted on 6/19 7:17am is an 1.5 hr long video of each team presenting their "idea" - I was so excited about many of the presentations that I decided to summarize below -

(I'm disappointed Team 1 didn't get recognition--I think they had some promising components, given how effective we know herbal remedies are and how little is studied about them. Hopefully they will continue developing their ideas and go for it again next time... will there be a next time?)
TEAM 1: HERBAL PROTOCOL SUPPORT

FINDINGS: Slow, drop-off rate, "watching grass grow," documentation of daily status its cumbersome

synergistic blend at therapeutic levels is key, 3 month see pos.
RESULTS: The team found improvement at a 3-month stage but it's the 6 month mark that they feel impact on sx, asked to remain on program at 12 os... they also created a video upload program that helps people document progress over time, which they are proposing will help people stay motivated and can help inspire each other)


TEAM 2: HEISER Team Martha's Vineyard High standard medical care for a chronically underserved population in a scalable model that can be reproduced across the country

TREATMENT MODEL: 1) abx, 2) naturopathic medicine (nutrition & detox), 3) psychotherapy. A team member is Jordan Fischer Smith--the Park Ranger in the Under Our Skin Documentary, intends to capitalize on philanthropic models, will have a staffed facility


$5000 GRANT AWARD WINNER
TEAM 3: Canine data Lyme tracking
Hacking & Tracking the Spread of LD

PROBLEM: Physicians lack of awareness of LD risk at the local level
- Lack of granular detail and frequency of publication in CDC data
- contributes to under-diagnosis and persistent disease

SOLUTION: National level surveillance and risk assessment tool
- The data already exists: canine data. CDC has validated shared risk between humans and dogs
- Working prototype –
- 1) LD prevalence map for the dog – nat’l data comes from lab test & major diagnostic groups (Idex & Nantech)
- 2) Screened annually & uses C6 antigen for Borrelia and sero prevalence against C6 as evidence of disease—the vaccination doesn’t confound the results of the C6 antigen test for prevelenece of seropositivity to Bb antigen (they can look at immunization to see if it pushes back prevalence of disease—esp WRT to OspA & OspB vaccination that came out this year)
- 3) Not regulated by HIPA so they produce data at granular level and push it out at a nat’l level.
- 4) Created an interactive website & mobile apps for easy access to disease risk maps for MDs
- 5) Currently have a algorithm system that inputs data turned into them on the 10th day of the month
- 6) Cost is in doing a retrospective analysis of the human data; CDC sets the bar at 5% threshold to identify endemic infections??? Goal is to identify “emergent risk” – 2011 study published – CDC determined that prevalence of LD in dogs is indicative of risk in human disease – True value of the data is that it helps non-endemic regions “ready”


PREVENTION RECOGNITION
TEAM 4: MODIS GIS Analysis for Wildlife Disease Prevention

PREMISE: Zoonotic Immunization - "If you can find where the mice are w/ LD you can prevent people from getting LD by dealing with the mice, first" or immunizing animals instead of people (was done w/ rabies in Europe). 9 years of research went into developing this vegetation/mice model - modeled after an in factious disease in the MW with a 40% mortality rate.
- OspA Lyme vaccine for mice - is on the market already, finalizing approval, distribution channels are ready
- This proposal is in helping identify where to find the mice to target - treating all is wasteful
- MODIS satellite tracking using enhanced vegetation index (EVI) that can show mouse population changes by following vegetation changes, where recreational areas are
- creates a "Lyme warning index" so you can see where it is spreading in vegetation changes, thus in mice population and then act on it BEFORE it hits human population


EDUCATION RECOGNITION
TEAM 5: Proven Children-centered Program for Tick Bite Prevention (ages 5-9)
In endemic area - two types of people: those with LD and those at risk to acquire it
Knowledge-based programs have never been shown to change behavior--what's different about this program is the focus on increasing sense of risk, self-efficacy & self-confidence to increase awareness and action

PROBLEM: Children have highest rate of LD (200/day) and there are no effective prevention programs in use today

SOLUTION:
- "Feel, Find, Free" program - short in-class tick bite prevention program proven in a randomized control trial to increase knowledge, attitude and the practice of precautionary behavior in kids (they practice pulling ticks off a mannequin arm and have a card to hang in the shower)
- Implementation - utilize existing dissemination models (D.A.R.E), train on-site health educators, provide tool kits & interactive learning matls, funding from private/public orgs - STATES ARE NOW MANDATING EDUCATIONAL PROGRAMS FOR KIDS!


$5000 GRANT AWARD WINNER
Team 6: DNA recombination Lyme therapeutic
Help immune system Kill Borrelia better: Borrelia are difficult to kill--abx resistance, immune evasion & antigenic variation
- Using the DNA structure to block DNA recombination in Borrelia that promotes pathogenicity - B shown to be rapidly cleared in mice studies
- Commercializable drug that allows our immune system to kill Borrelia (yeast screening as a precursor to mice screaming as a precursor to human screening) - use basis of cancer studies already done


(I'm sure most of you will agree that this proposal is almost unbelievable. How can the science and medical industry NOT already have a library like this??? SO EXCITED FOR THIS)
$5000 GRANT AWARD WINNER
TEAM 7: Plant based drug discovery
Using whole plant compounds to Build a Drug Discovery Platform
Collaboration btw Plant cell culture Library & lab of medical zoology

PROBLEM: Serious inadequacies in current tx options
- inconsistent
- persisters (doxy is ineffective and can lead to persistent disease state)
- adverse effects (regularly leads to complications)
- monotherapeutic (main drivers of abx resistance and rise of multi-drug resistant pathogens)

SOLUTION: Novel drug discovery platform to elicit and exploit the plant's natural immune response in a dose-dependent manner and harvest the defensive vital chemicals that are produced. The plant extracts are then taken and used to challenge a wide array of pathogens in a high through-put manner. (future of micro-avail discoveries)
- At the core of this drug discovery platform is an accessible, tunable and sustainable form of plant materials representing over 2200 unique plant species and is the largest, most diverse plant cell culture in the world.
- Promising results identified tuberculosis model; multi-drug resistant bacteria; fungal species
- novel drug cocktails for humans
Extracts represent a synergistic group of compounds that act in concert to have an “immunotory” effect on the pathogen.
- By “deconvoluting” these extracts we can determine the synergistic mechanisms by which these plants have been evolving for millions of years to fight off pathogens and microbes.
- We can exploit the synergistic mechanisms and molecules to fight off human pathogens in a much more robust manner than the current monotherapeutic methods that are proven to be less and less effective and danger of multi-resistant pathogens increases everyday.
- Many researchers around the world have been utilizing plant defense mechanisms, notably Youyou Tu who developed a powerful antimalarial drug from the Artemisia plant (won 2015 Nobel Prize)
- What a lot of people are doing in monotherapeutics is they are screening the same molecule database, the same FDA library of single molecules over and over again to try and treat these different pathogens but at the same time, what use is that? How are you find a new way to treat something if you’re just looking at the same molecules over and over again? Plants use multiple molecules—that’s how plant mechanisms work (it’s rare to find a plant that has a single defense mechanism that fights off these pathogens and the current research on plants is still doing that—including Youyou Tu. Another paper that was published showed that when the whole artemisia plant is used, there is another compound present that makes the artemisia more effective—and this combinational therapy can help prevent the rise of drug resistance.
- High throughput cell viability screens – (80 plants evaluated in a model organism for TB—6 were found that could be treatment for TB)… Many other organisms were tested (drug-resistant staph, ecoli, fungus in immunocompromised individuals. We are finding unique ways to screen how we interface the plants with the pathogens. When we introduced this fungus to living plant cells its growth rate was significantly reduced. They’ve been making these discoveries for over a yr now.
- Sometimes achieving effective concentrations are what makes some pharmaceuticals superior to plant-based protocols, currently in the process of discovery grant-funding is based on discovery/ “potential hits” – once they’ve done that they will break down to better understand the motive action, what the molecules are, Phase II: chromatography, mass spec. When we do these we’re deconvoluting these complex mixtures. The assays are done at a specific concentration of bacteria and a specific concentration of plant extracts so we know these values. And as we ID more hits, we’ll then go back and decide if we need to dilute it, purify it, what is the min. inhibitory concentration? We’re at the tipping poit and we want to bring Borrelia into that discovery.


(I believe this team leader is under the care of my LLMD)
$5000 GRANT AWARD WINNER
TEAM 8: LymeDot Mobile app that patients can use to track symptoms and share w/ MD

PROBLEM: Tx is beyond complex, dynamic and burdensome to the average compromised patient who struggles through the day, patients and MDs aren’t always close and communication is key in the MD helping the patient by successfully understanding the symptom status – progress or regression. Both need a reliable and accessible way to track impact tx has on sx.

SOLUTION: Enrich conversations w/ MD and help MD make better decisions on protocols. 25 patients/MDs asking for this technology
- Easy-to-use screen, patient is prompted for info and patients only have to answer relevant q’s
- Records real-time data
- Can link up self-reported data to a wearable device(pocket, watch)
- Prototype w/ 5+ MDs and their patients in Bay Area
- MDs can “push” questions to patient
- MD can set up together to decide what areas to focus on
- Currently using smart phone as primary medium (due to high demand and expected future saturation) but will also have a computer program
- 60-80 symptoms checklist might make initial set up longer but ongoing updates should be time efficient.


TEAM 9: Virtual Lyme Clinic

PROBLEM: Need to tackle the most prevalent vector-borne illness—an epidemic. Underreporting due to
1) lack of awareness and inaccessible or expensive & time-consuming consultations,
2) misdiagnosis often due to lack of experts in the field and
3) lack of gold standard of diagnosis and treatment because lack data sets currently available lack granularity, scale and metadata.

SOLUTION: Focused on prevention and moment of encounter, they’ve developed a readily accessible and medicine app , which reduces diagnosis and treatment process from weeks to hours. Own virtual clinical created in MD license in each state
- functional HIPAA complaint mobile app built on the AthenaHealth EMR
- App has 3 mechanisms:
1) report tick encounter
2) call MD
3) report on encounters map
- see bug on friend, take photo, consult w/ MD, describe clothing/sx/environment, local pharmacy, local lab, schedule video chat, pay, talk w/ lyme specialist who can see all data uploaded, prescribes drugs, order sent to pharmacy, follow-up scheduled, data uploaded to encounters map
- each tick encounter is time stamped and “geo-tagged”
- have functional HIPAA compliant video app deployed on the AthenaHealth platform.
- Digital nature of clinic allows us to scale patient visits to clinic visits in a way that traditional methods cannot. Administrative burdens can be reduced by 50%. No footprint.


TEAM 10: Diogenes

PROBLEM:
1) Patients are vulnerable, isolated and are at risk for medical, financial and social exploitation
2) Disconnect between what patients are experiencing and what is documented in records and understood or seen in the larger perspective of the medical realm, which puts patients at risk.
3) Many gaps in communication between care providers, patients, caregivers, social support services, public health entities and those that research Lyme
4) Patients who are suffering just do not give the best, most accurate information directly to their MDs– embarrassment over symptoms, confusion, psychological conditions (anxiety, PTSD), language difficulties, hearing impairment, fear or mistrust of medical profession

SOLUTION: “Diogenes” Lyme Wellness Solution
Process to collect info – patients want to share and have their experiences understood and talk w/ their MDs about their symptoms and treatment plans but there are overlying social and political aspects that can prevent that
- Set up a means to reach out to MD about what they are feeling (stressed),
- MD provides “soft” medical advice (take a walk, reach out to friend), and through this process data is collected and recorded regarding how underlying conditions affect prognosis
- Disconnect that personal info and make it more viably available in a national clearinghouse that allows external parties (private, public) access with no personal connection with the patient.


$5000 GRANT AWARD WINNER
TEAM 11: TextLyme
Integration into Crisis TextLyme
Team includes MH counselor, patients, advocates, MD, Data scientist

PROBLEM: Lack of awareness and support for mental health issues related to Lyme and tick-borne illnesses
- patients presently don’t have a voice, feel isolated, disenfranchised.
- Anxiety, depression, suicide ideation are all-too-common

SOLUTION: Leverage crisis text line to help Lyme patients
- provide knowledge, resources and support in connecting lyme patients to an already existing platform called Crisis TextLyme - nonprofit org has impacted over 3 million patients in 3 yrs
- patient experiencing panic attack
- text crisis hotline at 741741
- patient describes what is going on
- volunteer their situation and risk is assessed and provides info and resources
- key words can cue volunteer regarding LD
Data analysis: text mining; outcomes tracking; geospatial mapping
Data can be used to guide legislation & policy; allocate support & resources; focused prevention initiatives
Pipeline
- provide mental health resources, education & training materials
- Outreach & marketing through social media, support groups, Spaulding/Harvard/Dean Center
- Opportunity project – White House initiative to utilize heat map to provide information visibility for lyme


DIAGNOSTICS RECOGNITION
TEAM 12: TicPac: Propel Education and Prevention for Lyme

SOLUTION: Incentivize CVS to become “Tick Central”
- Demonstrate the financial opportunity for CVS is $15M/yr in profit
- Lyme services and profit areas in 800 CVS stores
- Minimize clinic office visits
- Clearinghouse for blood, urine and tick testing
- Antibiotic sales
- Tick prevention product sales
- Auxiliary sales from tick/lyme store visits
CVS would then
- Set up center aisle displays for tick prevention product sales in summer
- Train minute clinic staff to become expert tick and lyme first responders
- Give away one million “TiPac” cards (reference & tick collection info that is also a tick removal & storage device w/ tweezers, magnifying glass with plastic pocket) at a cost to CVS of 50 cents each
- Cost is about 15 cents per card to make
Patient brings card w/ tick into CVS
- Gets immediate medical attention
- Staff can see if tick is engorged and can administer immediate doxy prophylaxis
- CVS can send tick off for testing
- CVS can also take lab samples (blood, urine)


SURVEILLANCE & PUBLIC HEALTH
TEAM 13: iTick Live Reporting
Team:
- State Implementation: Catherine Brown, DVM State Epidemologist @ MA DPH;
- Academic Physician Implementation: Nevena Zabcenik DO Physician Co-Director Dean Center for Tick Borne Illness; Shing Law MD Pysician Boston Medical Ctr;
- Community Provider Implementation: Helen Monro, RN Patient/Proider Advocate Community Leader;
- Aftercare Development: Armand Hurlbert Software/Web Developer
- CDC Data
Centralized Tick-Borne Disease Reporting

PROBLEM: Underreporting (35% of cases reported to DPH went unconfirmed due to lack of clinical information), while mandated, is manual and extremely cumbersome in a paper network. The Health Dept has to interview the physician for each patient (takes 45 minutes).

SOLUTION: Web-based, centralized reporting tool
- Data is entered and shared with the Dept. of Public Health, which can then share it with CDC
- Live tracking allows trends to be tracked
- will pick up more of probable and confirmed cases the providers encounter
- saves DPH personnel resources
- empowers doctors to report cases
- compatible w/ DPH/CDC systems - utilizes DPH form
- open data live heat maps – available to public w/ anonymous patient info
Scalable to other states because the CDC’s platform is the same
Head of CDC ID VanBuren is interested in how to improve & engage better reporting


EDUCATION RECOGNITION
TEAM 14: Lyme and TBD Education CME online course
Literacy is knowing how to read and write. Education is to be able to reason, to use your ability to read and write to your benefit and to bee able to gain your spectrum of knowledge by trying to surge deeper into the literate knowledge imparted to you.

PROBLEM: There is a critical need for education to all the spectrum of healthcare providers from students to all specialties about these conditions with comprehensive and scientific base medicine, covering from basic sciences to all clinical presentations.

SOLUTION: The goal is to educated local and national and all over the world, impacting at the end the huge population affected by these conditions.
- Acknowledge the controversies about this disease and bring them together, however with their own and different viewpoints, in an effort, and b keeping in mind that the only and final benefit will be for the patient by listening and understanding each other’s opinions and referred to as creative or structured controversy.
- We will use a consortium model of collaboration with different and top leading institutions around the country. We will have the help and the experience putting together a CME course with Elizabeth Lee-Leweandrowski, Ph.D, MPH
- This team is conform by Doctors with different specialties
- Critical stakeholderst who need to uy into it – all providers, IDs and specialists, nurses, health care providers, students – everyone involved from prevention to treatment.
- Partners needed


DIAGNOSTICS RECOGNITION
Team 15: ?? (not included in video)

-p

Post Edited (Pirouette) : 6/26/2016 11:09:22 AM (GMT-6)

I actually like the teams that won. Boosting the immune system and herbal compounds. But more importantly "Whole and complete" compounds. That's the key. Pharmaceuticals can be more effective if they take this approach. Right now they are mostly single compounds.

Also the teams increasing awareness and helping patients through treatment is key as well.

I believe they did a good job picking the teams.

There's one elephant in the room though. TESTING. You can't treat if you don't know. Improve testing.

I'm watching it now. So they tested halting the recombination of borellia DNA in mice and it works. So yea, chop chop, can I get some of that like yesterday lol.

The author said:
"Last month, there was a Lyme science and policy forum on Capitol Hill. While the room was full, the event didn’t attract a single congressional staffer. The forum ended up being a lot of preaching to the choir — a choir of patients with severe, progressive Lyme disease who traveled to Washington to ask for greater investment in research. So they would find it encouraging that the White House and Department of Veterans Affairs are invested in the hackathon."

I would love to believe the tide is turning, but the news media still is weak in covering & the CDC still allowed to mandate. But again, let's keep that hope going.