An outpouring of response to this social media posting by John Caudwell (Phones4U founder, the UK’s biggest taxpayer and generous benefactor behind the Caudwell Childrens’ Charity and important monuments recognising National Heroes) got me thinking it might be useful to list ways that Mobile (an industry Caudwell knows very well) might be able to help contribute to the ‘action strategy’ for the team he plans to recruit.
If you have any ideas/suggestions please share them in the comments and I’ll update the thread:
> Seasonal notices on GP/Health websites
As is common with other seasonal health campaigns (hay fever, flu, etc) why not a cautionary SMS warning to Parents including a video (like the following one produced by the New York based Lyme Action Network but perhaps featuring a celebrity popular with young families) at the break up of school term?
> Hiking/Camping apps
I think it’s important to realise that with current childhood obesity levels we really don’t want to be planning anything that discourages children getting outside exercising so perhaps we put the investment into apps and online content (eg. perhaps a video featuring Ray Myers – a presenter I think would make a great member of Caudwell’s team) that young people are already enjoying.
> Research and Awareness Funding:
As we saw with the “ALS Ice Bucket Challenge” there’s huge scope to use mobile video content and social media to increase awareness of Lyme Disease. Perhaps John Caudwell could collaborate with the Lyme Disease Challenge set up by 5 women in the US:
> Mobile embedded GPS equiped monitoring tech could provide accurate sampling of environments that would show risk and how it varies throughout the year etc that could be useful for planning of public health campaigns.
> Although very few Healthcare Professionals actually understand Big Data the collection of symptom information could be invaluable and it underlines why we shouldn’t be letting healthcare professionals decide which symptom information they record.
> Symptom information is being missed
As with most illnesses that are considered to be quite rare and associated with vague symptoms, Lyme Disease symptoms are likely to be missed when Patients that are presenting to really busy GP practices (some NHS GPs are under pressure to see as many as 60 Patients a day) especially when the Patients aren’t known to the Doctor they are consulting with, or there are time pressures that force Doctors to have to interrupt Patients within seconds of them starting to share their story.
> Providing Patients with the time and helping them document their answers to the right questions
Evidence from Dr John Bachman, Prof of Primary Care at the Mayo Clinic, shows that we need to provide Patients and Carers with questionnaires that can help them to share their important history because evidence shows that people answer more honestly to computers than during face to face interviews.
As evidence builds that Lyme Disease may be sexually transmitted it’s also interesting to note that a recent piece of research showed that 25% of men visiting their NHS GP would reveal via a waiting room questionnaire that they’d experienced domestic violence/abuse.
Mobile can connect communities effected by Lyme Disease and facilitate important connections and the sharing of support resources.
Facilitating Carers and Patients who want to contribute to Clinical Research and Vaccine/Treatment trials
Mobile First Clinical Trial design can provide invaluable help in speeding up the discovery and understanding of poorly understood diseases and the new treatment and screening options that are coming to market.
*** *** UPDATE: 28 SEPTEMBER 2015 *** ***
Following a post to the 8,000 member Linkedin mHealth Group to try and find further ideas I got some interesting feedback from Andre Borve CEO of iDoc Inc First Derm, and Audun Boerve an International Manager in metallurgy, solar energy and metal based chemicals (perhaps they’re related?):
I’d like to see more data on this as it’s very interesting that a “send a picture of your skin to a dermatologist” app startup like FirstDerm is reporting “about one Lyme disease sent to us a week” that feature “the Eythema Migrans pattern” because this would suggest that perhaps there is no very defined active season (we would’ve expected incidence to be distributed bell curve style if there was eg. “during April-September – the warmer months – we’re inundated with Patients sending us images showing the EM pattern“). and so public health messages perhaps need to better stress the need for year round vigilance.
A glance at the Google Trends would also suggest that there’s no obvious annual pattern:
Another conclusion that can be drawn from this is that it proves how invaluable convenient, zero/low cost, mobile access to advice is going to be to improving the early reporting of symptoms so that effective treatment can be administered eg. in about a 1/3 of infected persons there’s no rash so these Patients will in all likelihood go unreported unless their Doctor provides convenient means for them to report symptoms.
*** *** UPDATE: 22 OCTOBER 2015 *** ***
In the post above I mentioned how important it is that we have systems in place to ensure Symptom information isn’t being missed. This week Harry Longman shared a deidentified AskMyGP “Skin rash” questionnaire output and asked the Doctors who read his GPAccess blog to vote on what they would you do if presented with the following questionnaire output:
I think it shows how clinically validated medical history taking questionnaires can add value eg. notice how it notes that the Patient hasn’t been walking in the woods or working outdoors in the last week, helps the Patient describe the rash and let’s the Patient upload a photo from their phone?
*** *** UPDATE: 27 OCTOBER 2015 *** ***
Researcher for newly founded Caudwell Lyme Disease Charity
The Role: Senior Research Associate or Postdoctoral Fellow: [newly founded Caudwell Lyme Disease Charity]
Full time/Permanent position/ Location flexible.
Remuneration will not be a barrier for the right candidate since the principal donor, John Caudwell, will pay all the operating and administrative expenses.
John Caudwell is seeking a hugely ambitious, tenacious and visionary researcher to take up this pioneering new role his newly founded Charity to tackle head on, what could very possibly prove to be, “ one of the greatest threats to public health in our time.” Your focus will be to establish multidisciplinary research, encompassing why growing number of patients fail to get correctly diagnosed; encompassing why many experience ongoing or relapsing symptoms after having been treated for Lyme disease; encompassing why diagnostic tests often do not provide definitive information regarding the presence or absence of infection; and encompassing why there are multiple possible mechanisms by which symptoms persist.
Our mission will to be quite literally lead one of the greatest medical discoveries in history, resulting in radically better diagnostic assays, more effective treatments and a new pathophysiologic understanding of symptom persistence.
Background: Notoriously difficult to diagnose, Lyme Disease often mimics other conditions and if not treated early on, can result in long-lasting symptoms. Since John shared his personal experience, in recent weeks there has been a mammoth groundswell in opinion that undiagnosed Lyme Disease may be endemic, and that hundreds of thousands of people could also be suffering needlessly. John (and he is not on his own) argues that if an entire family like his can be infected, the disease could be passed from mother to child in utero, alongside other methods of transmission, and – furthermore – that it could be the root cause of multiple other illnesses including M.E., CFS, Alzheimer’s, Parkinson´s and Multiple Sclerosis, and could also be a factor in various neuropsychiatric conditions.
John urged the Government to commission a relatively cheap study involving about 50 GPs testing chronic suffering patients, including those with ME, CFS, Parkinson’s and Alzheimer’s, for Lyme disease. The result might prove his suspicion that officials were “massively underestimating” when they suggested that there were 2,000-3,000 new cases of Lyme disease in England and Wales every year. However, rather than wait and hope, John has decided to launch a new Charity with the purpose for lobbying and demonstrating to the appropriate Government departments that investment and action is long, long overdue. This is, hopefully, where you come in:
• Extensive research experience at beyond PhD level including specialist skills in methods of systematic research synthesis to inform decision making.
• Ability to conduct literature reviews; collect and analyse quantitative and qualitative data; write project reports and make the research relevant to academic and non-academic users.
• Ability to contextualise own findings, to communicate them effectively and relate to a wide range of audiences.
• Able to work independently and as team to achieve project goals.
• Well organised, methodical approach, self-motivated with attention to detail.
• Willingness to undertake appropriate training and apply knowledge learnt.
• Ability to draft scientific reports/papers for publication/prepare presentations.
Next Steps: In the first instance please apply to firstname.lastname@example.org with a CV and brief/specific reasons why you feel that you may be suited to this unique opportunity.
*** *** UPDATE: 14 JANUARY 2017 *** ***
Snyder’s sensors detected a drop in blood oxygen levels and an increase in heart rate during his flight. Those changes weren’t out of the ordinary, but the levels didn’t return to normal as expected. Soon afterward, Snyder developed a fever and other signs of illness.
Two weeks before the big trip, Snyder had been helping his brother build a fence in rural Massachusetts. Based on the readings, Snyder suspected that he might have been infected with Lyme disease due to a tick bite.
I think this is a great example of how really smart people (Michael Snyder is a Stanford geneticist) all too often miss the opportunity as a result of their fascination with technology. In the Geek Wire video Michael lists the wearables he constantly wears 9 devices everyday (including “3 smartwatches” that are on his wrists) and a Dexcom G5, Withings BodyScale and some more ‘proprietary devices’.
Little detail is given on the quality of the diagnosis (did he find a bullseye rash etc?) and whether or not Snyder had indeed been infected on a previous occasion before he helped to build his brother’s fence but surely it’s obvious that the mHealth opportunity lies in much more basic medical education eg. to make Snyder more aware of the risk of ticks in rural Massachusetts and ways that he could’ve better protected himself while working outdoors?
From reading the article it appears Snyder was aware of the risk but might’ve been so distracted by the wearables (imagine trying to build a fence with your arms laden with clunky watches?) that the preventative opportunity was lost.