Sunday, November 27, 2016

Why do people believe that bottled water is better than tap water?


People may or may not have started out believing bottled water is better than tap water. However for >20 years now in the US, they've certainly been marketed to that way and consumption patterns suggest it worked.

In 1975, Americans hardly drank bottled water, just one gallon of bottled water per person per year on average. By 2005, it had grown to ~26 gallons per person per year (1). By 2012, touching 30 gallons per person per year (see figure below from 2), it had become the veritable 'superstar of the beverage industry' (3).


The US sociologist, Andrew Szasz offers an intriguing explanation for the explosion in bottled water consumption in recent decades. Calling it the phenomenon of 'inverted quarantine', modeled after quarantine, he characterizes it as a distinct consumer response to widespread threats, both perceived and real. In classic quarantine, the collective community and environment are deemed healthy and some discrete sources within it present a spreadable danger. The community then protects itself by isolating that source, i.e., the diseased individual(s). This reduces the chance that others will get exposed and spread the infection. What happens when the threat is perceived to be everywhere? When the surrounding environment itself is perceived to be toxic, dangerous? According to Szasz, in the US, many healthy individuals responded by isolating themselves from their disease-inducing environment. Healthy and relatively affluent. Hence 'inverted quarantine', a walling-off response to threats perceived everywhere, gated communities perhaps the purest expression yet of such impulses.
Contrasting it with past social movements which brought about change through collective action, Szasz characterizes choices to buy bottled water, and 'organic', 'natural', 'non-toxic' food, household and personal hygiene products as ultimate expressions of individualism. 'Assembling a personal commodity bubble for one's body' (3), an attempt to shop one's way out of trouble instead of banding together collectively to change the status quo. In the case of bottled water, it started with a long-perceived suspicion of tap water. Long before the tragic Flint water crisis, US residents reported their tap water mistrust in survey after survey (3, Chapter 3, reference 5).
'The 1999 National Consumer Water Quality Survey found that “about three -quarters [of American adults] have some concern regarding the quality of their household water supply” and “almost half are concerned about possible health-related contaminants.” Two years later, a follow -up survey found those numbers had grown bigger still. Eight -six percent agreed they had “concerns about their water,” and “51 percent worried about possible health contaminants.'
In other words, widespread perception of toxic industrial and agricultural chemicals polluting tap water. Once the beverage industry understood this was driving consumer interest in bottled water, it set about explicitly marketing it as a safer alternative to assuage precisely these concerns. While bottled spring water brands pitched the pristine purity of their bottled water (see some examples below from 3, chapter 3)...

Odwalla
'ANCIENT FRESHNESS™—The Odwalla water you are now meeting fell on the land as rain, snow, and glacial melt 16,000 years ago. When it began its circular journey deep into the earth, ecosystems were in balance, the air was clear, the landscape wild and primeval. It carried this prehistoric purity underground, where it has remained totally isolated from environmental changes. —This water is as pure as the day it fell to Earth 16,000 years ago.78'
Fiji Water
'water that has never been touched by pollution or dirtied by pollution because it was created hundreds of years before the industrial revolution and it’s been locked under the earth in an aquifer in Fiji . . . at the very edge of a primitive rainforest, 1,500 miles away from the nearest continent. . . . Far from pollution. Far from acid rain. Far from industrial waste. . . . when it comes to drinking water, “remote” happens to be very, very good.79'
...Brands sourcing their water from the public water system focused on the 'hypertechnological efforts' (3) to render the hitherto toxic pure (see some examples below from 3, chapter 3).

Big Sur Water Company
'goes through a carbon filter . . . then [it is] put through a vapor compression™ processor . . . then through a 1 micron . . . paper filter . . . [finally,] As the water then goes toward the filler, superoxygen in the form of ozone (O3) is injected into the water to assure our water will remain in a pure state after it is bottled.81'
Ionic
'The process used to purify and produce Aqua CoolR Pure Bottled Water involves the use of The Ionics ToolboxSM of technologies [that ToolboxSM has in it: Electrodialysis Reversal, Reverse Osmosis, Ultrafiltration, Adsorption] to obtain the complete removal of all dissolved and undissolved materials from the source water. The resulting highly pure water is then remineralized with a specific “menu” of minerals selected for taste and fortification.82'
Once such relentless, focused marketing succeeded and how (see an eyebrow-raising example below from Wikipedia), a virtuous positively reinforcing cycle came into existence. And it's a hard one to knock off. After all, the perceived threat is the subtle one of long-term consequences of ingesting low doses of 'toxic' pollutants present in tap water. Once beverage company marketers succeeded in convincing consumers of the superior safety of their product, it required less effort in expanding its appeal by pitching it to the health-conscious as a lifestyle choice. And thus, bottled water sales increase year on year.


Irony of choosing bottled water over tap water is it implicitly imbues beverage companies with saintly trustworthiness that may be just as unwarranted.

Bibliography
1. Beverage Marketing Corporation of New York, “News Release: Bottled Water Continues Tradition of Strong Growth in 2005,” April 2006, Consulting, Advisory Services, Trend Data and Market Reports for the Global Beverage Industry
2. Bottled Water Sales: The Shocking Reality. Peter Gleick, April 25, 2013.

https://www.quora.com/Why-do-people-believe-that-bottled-water-is-better-than-tap-water/answer/Tirumalai-Kamala


Sunday, November 20, 2016

Are there any animals that actually enjoy being hugged by humans?


Question could be examined from at least three angles.
  • How do animals react to a human's hug as in are there any physiological similarities between animal and human response to hugs?
  • Do animals offer hugs to each other in their native habitats in social contexts plausibly similar to those among humans?
  • Do animals offer hugs to humans?
Currently there seem to be scientific studies about the first two but not the last question.

How do animals react to a human's hug? Examples from Indirect Dog Studies.
What's a hug but a gesture of affection, consolation and/or support? If pet dogs expected such affectionate gestures from their human parents/owners as a matter of course, a logical extension would be that such expectations entail possessiveness expressed as jealousy when the dogs see those same gestures extended to others in their environment. So do pet dogs express jealousy in such situations?

I. A 2012 Plos One study on 36 dogs studied in their homes suggested they became jealous when they observed a rival for their affection (1). The study videotaped the dogs' reactions when their human parents/owners ignored them to instead pay attention to a stuffed animal, a jack-o-lantern pail or a pop-up book they read aloud. The stuffed animal consisted of a realistic-looking dog that barked, wagged its tail and whined. The authors chose not to include real rival dogs because such situations would be more difficult to control and would have yielded results much more difficult to interpret. The dogs in the study included a variety of breeds ranging from a Boston terrier, Yorkshire terriers, chihuahuas, mutts and a pug.
The study found a clear hierarchy of perceived affection deprivation
  • 78% would push or touch the human parent/owner when they petted or sweet-talked the fake dog.
  • 42% became upset when the human parent/owner gave attention to the jack-o-lantern pail.
  • 22% became upset when the human parent/owner gave attention to the book.
Only a preliminary study so results can't be taken as conclusive and there are caveats as well. Study was small, only 36 dogs. The researchers didn't record the dogs' initial reactions to these new objects so we don't know if the dogs' reactions were to the objects per se or to human parents'/owners' interactions with them. However, the study does suggest that jealousy may not be solely a human construct nor based on sexual rivalry alone. Rather it may stem from 'the need to secure resources in all kinds of valued social relationships, be they sexual, parental, sibling, or just friendly' (2).

II. In a first of its kind study, animal cognition scientists at Eotvos Lorand University in Budapest trained dogs to lie still in an https://en.wikipedia.org/wiki/Ma... machine, and compared human (n=22) and canine (n=11) brain activity in response to different human and dog sounds such as voices, barks, and meaningful grunts and sighs that both species articulate (3). They found that happy sounds lit up the auditory cortex in both humans and dogs. According to Attila Andics, the neuroscientist and lead author of the study, dogs seems to be neurologically hardwired to pick up on their human companions' subtle mood shifts (4). This suggests they may welcome and appreciate hugs from their human parents/owners.

III. In another dog MRI study, Emory University also trained dogs (n=37) to lie still in an MRI machine and measured their neural responses to smells of familiar and unknown people using Functional magnetic resonance imaging (5). They found dog owners' smell triggered their brains' caudate nucleus, the brain's 'reward center'. This is extremely pertinent since dogs use their noses to navigate through the world. Study of how their brains process smell stimuli could improve our understanding of their social world, what's important, what's not, and how this process is similar or not to that in humans. In this case, smells of their human parents/owners seemed to be looped into their brains' reward circuits. Again, this suggests they'd likely enjoy being hugged by their human parents/owners. A follow-up fMRI study on 13 dogs found somewhat similar results in response to touch (6).

Caveats with these MRI studies is dogs were trained to sit motionless in the MRI machines using food rewards, i.e., essentially bribed to submit to such examinations (see photos below from 3). That definitely muddies the waters since it diminishes the dogs' autonomy in the experimental process (7).


Do animals offer hugs to each other in their native habitats? Example From A Chimpanzee Study.
If animals within a particular species are seen hugging each other, presumably they wouldn't mind hugs from humans either or at least from humans they're familiar with and perceive to be non-threatening. The former has indeed been documented in chimpanzees. In one of the largest studies of its kind and led by the acclaimed primatologist Frans de Waal, research showed two outdoor-housed groups of chimpanzees consistently and spontaneously consoled individuals with whom they were socially close, consolation defined as interaction 'in which an uninvolved bystander initiates friendly contact with a recent victim of aggression' (see photo below from 8).


Bibliography
1. Harris, Christine R., and Caroline Prouvost. "Jealousy in dogs." PloS one 9.7 (2014): e94597. http://journals.plos.org/plosone...
2. Dogs Get Jealous, Too. National Geographic, Jennifer S. Holland, July 23, 2014.
3. Andics, Attila, et al. "Voice-sensitive regions in the dog and human brain are revealed by comparative fMRI." Current Biology 24.5 (2014): 574-578. http://ac.els-cdn.com/S096098221...
4. Brain Scans Reveal What Dogs Really Think of Us. Science.Mic, Theresa Fisher, November 20, 2014.
5. Berns, Gregory S., Andrew M. Brooks, and Mark Spivak. "Scent of the familiar: An fMRI study of canine brain responses to familiar and unfamiliar human and dog odors." Behavioural processes 110 (2015): 37-46. Scent of the familiar: An fMRI study of canine brain responses to familiar and unfamiliar human and dog odors
6. Cook, Peter F., Mark Spivak, and Gregory S. Berns. "One pair of hands is not like another: caudate BOLD response in dogs depends on signal source and canine temperament." PeerJ 2 (2014): e596. https://peerj.com/articles/596.pdf
7. Dogs Are Not People. Boston Review, Colin Dayan, January 23, 2014.
8. Romero, Teresa, Miguel A. Castellanos, and Frans BM de Waal. "Consolation as possible expression of sympathetic concern among chimpanzees." Proceedings of the National Academy of Sciences 107.27 (2010): 12110-12115. http://www.pnas.org/content/107/...


https://www.quora.com/Are-there-any-animals-that-actually-enjoy-being-hugged-by-humans/answer/Tirumalai-Kamala


Sunday, November 13, 2016

How widely accepted is the link between meat consumption and climate change?



 Logic dictates that if the link between meat consumption and climate change were widely accepted, industrial meat production would decrease, governments would push policies towards achieving such a goal, and per capita meat consumption rates would decline. But simple, straightforward logic isn't the only attribute to guide our actions, is it? Instead, notwithstanding the link between global meat production and climate change, the data show that meat production and consumption are on the rise globally as industrialization globalizes, industrial agriculture replaces traditional small-scale farming and hundreds of millions of humans are pulled out of poverty. Why does affluence tend to go hand in hand with meat consumption? Meat eating's a status symbol for the newly affluent the world over. A look at some of the obscene, shocking numbers suffices to convince we're far from global peak industrial meat production and consumption (see figures below from 1, 2, 3, 4).

Industrial meat production's much more inefficient in energy conversion and much more unsustainable in terms of deforestation and desertification, i.e., much more costly for Mother Earth.
  • For e.g., massive forest cover's already been depleted in Brazil to make way for croplands needed to sustain food animal feed crops (soybean, corn).
  • Land taken over for monoculture crop production for animal feed tends to become degraded faster.
  • Industrial food animal production (IFAP) also requires massive freshwater use, this when increasing millions of humans the world over lack access to potable (safe drinking) water.
  • Animal poop and pee from IFAPs heavily pollute nearby lands and waterways, working their way through the ecosystem.
  • Also working their way through the ecosystem are the massive doses of antibiotics these hapless masses of animals are fed to accelerate their weight gain so they're ready for market that much sooner.
  • Not to mention the sheer immeasurable pain and suffering of billions of food animals housed in soul-destroying inhumane conditions.
Rounding off such a perfectly dreadful litany of intractable problems associated with IFAP is its unmistakable contribution to global greenhouse gas (GHG) emissions.

So why, in the face of all the most compelling data advising otherwise, are meat production and consumption increasing globally?
  • For one, IFAP's rise accompanies our increasing dissociation with the source of our food (2). It's not just food animal raising that's industrialized. So has their slaughter. The Brazilian company JBS is the world leader in animal slaughter. Its worldwide facilities can slaughter 85000 cattle, 70000 pigs and 12 million birds...every day. Following close on its heels is the US firm Tyson which can slaughter 170000 cattle, 350000 pigs and 42 million chickens...every week (2). And it isn't by accident that industrialized country IFAPs and abattoirs (slaughterhouses) are located far from cities in rural backwoods nor that they employ low-wage workers working in terrible conditions, i.e., captive labor market. Most industrial country consumers and increasingly, urban consumers in industrializing countries buy prettily packaged pre-cut slabs of meat in urban supermarkets, The Stepford Wives world far removed from the slaughterhouses with their rivers of blood, squeals, bulging eyes and sheer soul-chilling terror.
  • For another, why change current habits when there's no immediate penalty for the status quo and no incentive for change? After all, governments haven't shown much inclination to curb meat consumption nor taken a stance against IFAPs and CAFOs (Concentrated Animal Feeding Operation) nor have citizenry successfully prevailed upon them to do so.
  • Lastly, scientifically exploring the link between diet and climate change is of fairly recent vintage. It started in the late 1990s with Goodland saying 'diet matters' in the conversation about climate change (5). Since then many researchers have used life analysis and input-output models to estimate energy consumptions and GHG emissions of different foodstuffs (6, 7). Global meat production and climate change were first definitively linked in 2006 in a groundbreaking, massive (400 pages) study by Henning Steinfeld et al at the UN's Food and Agriculture Organization (FAO). This was the first study that clearly showed 'the livestock sector emerges as one of the top two or three most significant contributors to the most serious environmental problems' (8). They estimated global meat production contributes to 15 to 24% of total annual GHG emissions (5 to 7 X 109 tonnes per year).  Studies since show that meat and dairy production in particular are associated with disproportionately high GHG emissions (9, 10).
Since agriculture and related industrial activity are a massive part of the global economy, and directly and indirectly employ at least 1/7th of the global human population, there's been immediate and sustained pushback against the argument linking IFAP to GHG emission (see reference 8's wikipedia page for sources and their rationale). However, the conflict of interest inherent in the stance of such stakeholders renders their arguments weak and unconvincing.

Meantime, as the figures above show, meat production in places like China and Brazil has only increased even more steeply in the last few years. This means global meat production's contribution to GHG is only increasing, not decreasing and it will continue to do so unless and until governments intervene with specific policy changes. They could stop or curtail massive subsidies to agriculture for example so that we each pay the real price for our food. Pigs are likely to fly sooner. Yet if nothing changes, inevitable major environmental cataclysms from anthropogenic global warming (AGW) will likely hijack the agenda willy-nilly or IFAP-sourced pandemics will help wipe out a substantial chunk of global human population (11). Our pathetic history of collective problem solving shows these latter possibilities are far more likely than timely and wise government intervention, and when such eventualities inevitably come to pass, those humans unlucky enough to survive such apocalyptic catastrophes will perforce need to change their obscenely profligate abuse of Earth and domesticated animals. In fact, such survivors would likely no longer be able to dictate terms and the Earth will be all the more better off for it.

Bibliography
1. Growing greenhouse gas emissions due to meat production. UN Environment Programme (UNEP), 2012. http://www.unep.org/pdf/unep-gea...
2. Meat Atlas: Facts and Figures about the animals we eat. Heinrich Boll Stiftung, 2014. https://www.bund.net/fileadmin/b....
3. FAOSTAT
4. Thornton, Philip K. "Livestock production: recent trends, future prospects.” Philosophical Transactions of the Royal Society of London B: Biological Sciences 365.1554 (2010): 2853-2867. http://rstb.royalsocietypublishi...
5. Goodland, Robert. "Environmental sustainability in agriculture: diet matters." Ecological Economics 23.3 (1997): 189-200. http://www.is.cnpm.embrapa.br/bi...
6. Coley, David A., Emma Goodliffe, and Jennie Macdiarmid. "The embodied energy of food: the role of diet." Energy policy 26.6 (1998): 455-460.
7. Phetteplace, Hope W., Donald E. Johnson, and Andrew F. Seidl. "Greenhouse gas emissions from simulated beef and dairy livestock systems in the United States." Nutrient cycling in agroecosystems 60.1-3 (2001): 99-102. https://www.researchgate.net/pro...
8. Steinfeld, H., Gerber, P., Wassenaar, T., Castel, V., Rosales, M. and de Haan, C. (2006). Livestock’s long shadow: Environmental issues and options. Food and Agriculture Organization of the United Nations (FAO), Rome, Italy. Livestock's Long Shadow
9. Eshel, Gidon, and Pamela A. Martin. "Diet, energy, and global warming." Earth interactions 10.9 (2006): 1-17. http://www.environmentalcalculat...
10. Stehfest, Elke, et al. "Climate benefits of changing diet." Climatic change 95.1-2 (2009): 83-102. http://dels.nationalacademies.or...
11. Leibler, Jessica H., et al. "Industrial food animal production and global health risks: exploring the ecosystems and economics of avian influenza." Ecohealth 6.1 (2009): 58-70. http://are.berkeley.edu/~dwrh/CE...


https://www.quora.com/How-widely-accepted-is-the-link-between-meat-consumption-and-climate-change/answer/Tirumalai-Kamala


Sunday, November 6, 2016

How can clinical trial enrollment be increased?


In this technocracy dominated era, there's no dearth of technological approaches to improve clinical trial (CT) participation. Ranging from alert systems linked to electronic health records (1) to online registries (2, 3, 4), the usual technology-based suspects have made their appearance on the scene to no avail. For e.g., available free to anyone online, ResearchMatch allows any US resident to register as a potential CT participant (volunteer). Hosted at Vanderbilt University and funded by the NIH, this registry launched in December 2008. Yet >7 years on, its name recognition is limited and <100000 volunteers have signed up (2).

Obviously, core of the problem requires a human, not technological, touch. Meantime, the general population gains the bulk of its knowledge about CTs from entertainment fare online or on TV and from news (5, 6, 7, 8). Obviously such sources are more likely to fuel and sustain misconceptions rather than anything remotely close to the truth about CTs. Essentially, the current CT ecosystem woefully under-utilizes two of its foundational pillars,

1) Referring physicians and other healthcare providers who lead patients to CTs (9, 10).
2) Current and previous CT participants, i.e., potential Patient Advocates.
Even more inexplicably, pertinent questions relating to the CT process remain unanswered
  • What's the difference between healthcare providers who either do or don't participate in CTs, and between those who either do or don't refer patients to CTs?
  • What are the recruiting strategies used by successful CTs (11, 12, 13)?
  • Why don't organizers of successful CTs routinely record and report their recruiting strategies? Clearly trial funders should mandate their doing so.
  • What level of engagement remains with CT participants after a trial's over? Do trial organizers and their staff stay in touch with them? While volunteers are enrolled in a trial, which can be for several months to even years, do trial organizers develop a rapport with at least their most enthusiastic participants, and teach and encourage them to advocate and recruit newer volunteers on their behalf within their families and communities (14, 15)? Given the current state of affairs, clearly not and yet wouldn't doing so set up a virtuous positively reinforcing cycle leading to cumulatively increasing CT participants? Instead, why is the system set up to recruit and forget once the trial's over? Isn't this an egregious example of re-inventing the wheel every time?
~70 years since the 1st double-blind, placebo-controlled randomized CT and with >210,000 ongoing registered CTs across the US and 193 other countries (see figure below from 16), it's scarcely believable but sadly true that such basic issues aren't well-studied nor their lessons freely available for others' benefit (17, 18).


Upon reflection, it's only to be expected that an inherently top-down and paternalistic enterprise like human biomedical research would under-utilize Patient Advocates. After all so insular is it that its very basics such as research ethics and regulatory oversight have been developed without seeking and incorporating the input of research volunteers (19), who are more frequently described condescendingly as subjects. Even peer-reviewed literature about woefully lacking CT participation rates is dominated by the voices of biomedical research aficionados. Where are the voices of CT participants? Why don't medical and scientific journals report their perspective, about their experiences and suggestions in their own words? Imbalance couldn't get starker than this (20). When was the last time the US FDA or the NIH convened meetings or town halls specifically inviting volunteer input into the CT process? Never. The current CT world is strikingly insular (21, 22).
'Findings concur with previous research suggesting that CT investigators rarely communicate about clinical research outside of specific, study-based recruitment messages, which are often only provided to current patients already familiar with the medical institution...Findings from the current study, however, show that CT teams rarely promote CT research outside of the medical setting or reach out to community organizations to serve as an important conduit between the medical institution ß and hard-to-reach populations...Although investigators rely heavily on local physicians to recruit patients into their studies, there may be limited communication between the investigators and local physicians [37] and between these local doctors and their patients [28].'
(8).
The funders and fund recipients, i.e., clinical researchers and their support staff working largely in academic medical centers, currently control the process. They hold endless rounds of meetings and write exhaustive white papers and reports filled with earnest recommendations. These current CT stakeholders haven't yet thought to expand their fold and bring into it the ones whose voices perhaps matter the most in CT participation and logistics, patients and volunteers who've participated in CTs, i.e., Patient Advocates. We all know new drugs and therapies can't get approved unless robustly tested on large pools of volunteers, and yet those same volunteers, the very heart of human biomedical research, have no say in how the process could be structured so their ranks stay filled, not depleted.

What Factors Deter CT Participation And How They Could Be Mitigated
Obvious ones are fears about unapproved medications and procedures, i.e., that one could be used as a 'guinea pig', as well as fears of side-effects, and that one could get a placebo instead of Rx due to randomization. Given such fears are likely pervasive among the population at large (23, 24, 25, 26), who could be more persuasive in convincing others to participate in CTs than those who've done so themselves? If previous trial participants aren't doing so, maybe there's something inherently discouraging about the process that urgently needs to be overhauled? While the medical and scientific aspects of CTs are rightfully the purview of clinical researchers and scientists, and should remain so, these patient-centric aspects are areas where Patient Advocates could help reshape the process to encourage others.

Studies also suggest local community-based sources of CT information are seen as more trustworthy. These include local doctors, TV and community health centers (7). As well, informal family and community networks, i.e., family and friends, and local church and faith-based organizations (26).

Cancer Clinical Trial (CT) Participation Rates Are High In Children Regardless of Race/Ethnicity But Very Low Among Adults. What Accounts For Such A Difference?
Poorly envisaged top-down policies often lack mechanisms to enforce their recommendations. In US biomedical research, one of the most prominent examples is the 1993 NIH Revitalization Act that mandates inclusion of racial and ethnic minorities in federally funded biomedical research (27). 23 years on, African Americans and Hispanics represent 12% and 16%, respectively, of the US population and yet constitute only 5% and 1% of CT participants (28) while whites are over-represented (29). Why is this so? Among US CT volunteers, blacks are supposed to mistrust medical research, and language and culture are supposed to be barriers to Hispanic participation while implicit bias among clinical researchers is supposed to disfavor minority participation in CTs. However, a crucial piece of data unerringly rebuts these oft-repeated myths because there's more than adequate participation among children regardless of race/ethnicity compared to dismal rates among adults.

In the US, only 3 to 5% of ~10 million adults with cancer participate in CTs (30). However, CT enrollment among <15 years old is anything but dismal. In the US, 60% of cancer patients aged <15 years are enrolled in CTs (31). That's not all. Proportion of minority pediatric cancer patients enrolled in cancer CTs (~10% blacks, ~12% Hispanic) ~matches their proportion in the population (32). This means neither do pediatric minorities systematically lack access to health research nor face systemic bias against CT enrollment. How to explain this huge difference between children and adult CT enrollment rates? What's different about the pediatric CT recruitment process? Undoubtedly, applying what works in recruiting children to CTs would hugely improve adult enrollment rates.

Crux Of The Problem: Huge Gap Between Eligible And Actual Adult Clinical Trial (CT) Participants
Real gap in adult CT enrollment is ~10X. For e.g., in the US, ~20% of cancer patients are typically eligible to participate (33, 34) but only 3 to 5% of them do so (30). This huge gap between eligible and actual participants is the critical problem needing to be solved. Weakest link in the chain? Extremely poor inclusion of referring physicians and Patient Advocates into the CT recruitment process, i.e., we're back to square one, the need to expand the fold of current CT stakeholders to include patients and volunteers, and their physicians, and seek their input in improving CT participation and logistics. One approach could be to have CT participants access trial-related procedures and services closer to their home rather than exclusively at academic CT sites, which are often far from their homes.

Clinical Trial (CT) Location Matters Hugely To CT Participants
Travel distance to and lack of transportation to and from the trial site are major barriers in CT participation (35, 36, 37). Even in the US, arguably the wealthiest country in the world and unquestionable global CT leader, many if not most CT volunteers need to drive >1 hour each way to reach a CT site (see figure below from 38).


Bibliography
1. Embi, Peter J., et al. "Effect of a clinical trial alert system on physician participation in trial recruitment." Archives of Internal Medicine 165.19 (2005): 2272-2277. https://www.researchgate.net/pro...
2. Harris, Paul A., et al. "ResearchMatch: a national registry to recruit volunteers for clinical research." Academic medicine: journal of the Association of American Medical Colleges 87.1 (2012): 66. http://www.ncbi.nlm.nih.gov/pmc/...
3. Denicoff, Andrea M., et al. "The National Cancer Institute–American Society of Clinical Oncology Cancer Trial Accrual Symposium: Summary and Recommendations." Journal of Oncology Practice 9.6 (2013): 267-276. Summary and Recommendations
4. Tan, Meng H., Matthew Thomas, and Mark P. MacEachern. "Using registries to recruit subjects for clinical trials." Contemporary clinical trials 41 (2015): 31-38.
5. Kelch, Robert P. "Maintaining the public trust in clinical research." The New England journal of medicine 346.4 (2002): 285.
6. Len-Rios, Maria E., and Qi Qiu. "Negative articles predict clinical trial reluctance." Newspaper Research Journal 28.1 (2007): 24.
7. Tanner, Andrea, et al. "Communicating Effectively About Clinical Trials With African American Communities A Comparison of African American and White Information Sources and Needs." Health Promotion Practice (2015): 1524839915621545.
8. Tanner, Andrea, et al. "Promoting clinical research to medically underserved communities: Current practices and perceptions about clinical trial recruiting strategies." Contemporary clinical trials 41 (2015): 39-44.
9. Baer, Allison R., et al. "Engaging referring physicians in the clinical trial process." Journal of Oncology Practice 8.1 (2012): e8-e10. Engaging Referring Physicians in the Clinical Trial Process
10. Robinson, M. Koa, JoAnn U. Tsark, and Kathryn L. Braun. "Increasing primary care physician support for and promotion of cancer clinical trials." Hawai'i Journal of Medicine & Public Health 73.3 (2014): 84. http://www.hjmph.org/HJMPH_Mar14...
11. Lai, Gabriel Y., et al. "Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials." Clinical Trials 3.2 (2006): 133-141. Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials
12. Friedman, Daniela B., et al. "How are we communicating about clinical trials?: an assessment of the content and readability of recruitment resources." Contemporary clinical trials 38.2 (2014): 275-283.
13. Friedman, Daniela B., et al. "A qualitative study of recruitment barriers, motivators, and community-based strategies for increasing clinical trials participation among rural and urban populations." American Journal of Health Promotion 29.5 (2015): 332-338. https://www.researchgate.net/pro...
14. Friedman, Daniela B., et al. "Improving our messages about research participation: a community-engaged approach to increasing clinical trial literacy." Clinical Investigation 4.10 (2014): 869-872. http://www.future-science.com/do...
15. Tanner, Andrea, et al. "Barriers to medical research participation as perceived by clinical trial investigators: communicating with rural and African American communities." Journal of health communication 20.1 (2015): 88-96.
17. Michaels, Margo, et al. "Impact of Primary Care Provider Knowledge, Attitudes, and Beliefs about Cancer Clinical Trials: Implications for Referral, Education and Advocacy." Journal of Cancer Education 30.1 (2015): 152-157.
18. Sriphanlop, Pathu, et al. "New York state health care provider participation in clinical trials: a brief report." (2016). http://www.vipoa.org/journals/pd...
19. Dresser, Rebecca. "What Subjects Teach: The Everyday Ethics of Human Research." Wake Forest Law Review 50 (2015): 301. What Subjects Teach: The Everyday Ethics of Human Research
20. Holzer, Jessica K., Lauren Ellis, and Maria W. Merritt. "Why We Need Community Engagement in Medical Research." Journal of Investigative Medicine 62.6 (2014): 851-855.
21. Comis, R. L., et al. "Baseline study of patient accrual onto publicly sponsored US Cancer Clinical Trials: an analysis conducted for the global access project of the National Patient Advocate Foundation." Philadelphia, PA, Coalition of Cancer Cooperative Groups (2006): 1-52.
22. Friedman, Daniela B., et al. "What do people really know and think about clinical trials? A comparison of rural and urban communities in the South." Journal of community health 38.4 (2013): 642-651.
23. Meropol, Neal J., et al. "Barriers to clinical trial participation as perceived by oncologists and patients." Journal of the National Comprehensive Cancer Network 5.8 (2007): 753-762. Barriers to Clinical Trial Participation as Perceived by Oncologists and Patients
24. Weckstein, Douglas J., et al. "Assessment of perceived cost to the patient and other barriers to clinical trial participation." Journal of Oncology Practice 7.5 (2011): 330-333. http://nnecos.org/Resources/Docu...
25. Fleisher, Linda, et al. "Application of best practice approaches for designing decision support tools: the preparatory education about clinical trials (PRE-ACT) study." Patient education and counseling 96.1 (2014): 63-71. http://www.ncbi.nlm.nih.gov/pmc/...
26. Bell, Jennifer AH, and Lynda G. Balneaves. "Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients’ relational autonomy." Supportive Care in Cancer 23.4 (2015): 1169-1196.
27. Chen, Moon S., et al. "Twenty years post‐NIH Revitalization Act: Enhancing minority participation in clinical trials (EMPaCT): Laying the groundwork for improving minority clinical trial accrual." Cancer 120.S7 (2014): 1091-1096. Twenty years post-NIH Revitalization Act: Enhancing minority participation in clinical trials (EMPaCT): Laying the groundwork for improving minority clinical trial accrual - Chen - 2014 - Cancer - Wiley Online Library
28. Clinical Trials Shed Light on Minority Health. FDA, April 2013. http://www.fda.gov/downloads/For...
30. Murthy, Vivek H., Harlan M. Krumholz, and Cary P. Gross. "Participation in cancer clinical trials: race-, sex-, and age-based disparities." Jama 291.22 (2004): 2720-2726. https://www.researchgate.net/pro...
31. Fern, Lorna A., and Jeremy S. Whelan. "Recruitment of adolescents and young adults to cancer clinical trials—international comparisons, barriers, and implications." Seminars in oncology. Vol. 37. No. 2. WB Saunders, 2010.
32. Bleyer, W. Archie, et al. "Equal participation of minority patients in US national pediatric cancer clinical trials." Journal of pediatric hematology/oncology 19.5 (1997): 423-427.
33. Sateren, Warren B., et al. "How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials." Journal of Clinical Oncology 20.8 (2002): 2109-2117.
34. Brawley, Otis W. "The study of accrual to clinical trials: Can we learn from studying who enters our studies?." Journal of Clinical Oncology 22.11 (2004): 2039-2040. Can We Learn From Studying Who Enters Our Studies?
35. Kanarek, Norma F., et al. "Geographic proximity and racial disparities in cancer clinical trial participation." Journal of the National Comprehensive Cancer Network 8.12 (2010): 1343-1351. Geographic Proximity and Racial Disparities in Cancer Clinical Trial Participation
36. Coakley, Meghan, et al. "Dialogues on diversifying clinical trials: successful strategies for engaging women and minorities in clinical trials." Journal of women's health 21.7 (2012): 713-716. http://online.liebertpub.com/doi...
37. Itty, Tracy Line, Felicia Schanche Hodge, and Fernando Martinez. "Shared and unshared barriers to cancer symptom management among urban and rural American Indians." The Journal of Rural Health 30.2 (2014): 206-213. https://www.researchgate.net/pro...
38. Galsky, Matthew D., et al. "Geographic Accessibility to Clinical Trials for Advanced Cancer in the United States." JAMA internal medicine 175.2 (2015): 293-295. Accessibility to US Clinical Trials for Cancer


https://www.quora.com/How-can-clinical-trial-enrollment-be-increased/answer/Tirumalai-Kamala


Sunday, October 30, 2016

What are some opportunities for amateur scientists to contribute to real scientific progress in their spare time?


Wild-life conservation and ornithology are two fields where amateur scientists already contribute. More amateur involvement could help transform more citizens into becoming better committed and engaged stewards of their local environments. Such contribution may even be vital in this era of massive climate change. Committed eyes and ears on the ground help every bit as much as professional researchers in mapping and quantifying how climate change is impacting flora and fauna.

The Amateur Scientist And Wild-life Conservation: The Example Of Chennai, India, Students And The Olive Ridley Turtle
By the Bay of Bengal, the South Indian city of Chennai is one of the largest metropolitan areas in the country. No surprise that population growth and economic development threaten its local ecology. One casualty has been the Olive ridley sea turtle. Globally they've steadily lost their nesting sites and are now considered endangered. Annually returning to the same beach where they hatched, female turtles lay their eggs in a process of synchronized nesting. Thus, every year like clockwork, from January until April, Olive Ridley turtles arrive at Chennai's southern beaches, from Neelankarai to Edward Elliot's Beach, a distance of ~ 7 kms. Turtle eggs are highly vulnerable to predation and of course to man-made depredations, inadvertent or otherwise. In what is possibly one of the most beautiful and touching examples of volunteerism or altruism or service for the greater good or call it what you will, since 1987, the Students Sea Turtle Conservation Network, a voluntary group of mainly students gathers every night from January until April. From 11PM until ~ 3 to 4AM, they walk the 7 km beach stretch, looking for newly laid turtle eggs. They collect and relocate them to a nearby hatchery. When hatchlings emerge 45 days later, the volunteers release them safely into the sea.
In their own words (1),
'The SSTCN was initially organized and operated by students, aged 16 to 25. While a few ‘non – students’ (lawyers, biologists, conservationists, business professionals, etc.) advised, the leadership, organisation and manpower were principally from this age group. Once students finish courses, they routinely leave Madras [now renamed Chennai] after participating in or leading the organisation for two to three years, so the SSTCN has seen a high turnover of both membership and leadership.
SSTCN’s activities include beach monitoring, hatchery management, protection of clutches left in the beach (‘in situ nests’), and education and awareness campaigns; the programme has continued from 1988 until present. Each season, the group establishes a hatchery at Neelangarai, and every night from end-December through mid-March, the same 7 km stretch of beach is patrolled. Some years, when there are enough volunteers, the patrolling extends an additional 5 to 10 km beyond Neelangarai to the north. Due to egg predation by feral dogs and people, most nests along this stretch are highly vulnerable.
Consequently, most egg clutches that can be found are relocated to the hatchery. At the hatchery, nests are monitored and a few days prior to expected emergence of hatchlings, they are enclosed with plastic or thatch baskets, to restrain the hatchlings from crawling on to the beach, where chances of predation are high. Hatchlings are released at the edge of the sea the same night of emergence, and the respective nests are excavated to evaluate hatching success.
Experiments with nest spacing and shading have been conducted to improve hatching success, which has remained over 80% during most years since 1992 (Shanker 1995, 2003). Average densities on the beach range from 10 – 15 nests with eggs per km, and the group has collected between 50 and 200 clutches per year (now totalling some 120,000 eggs) and released about 80,000 hatchlings over the past 15 years (Shanker 2003). Since 1988, the sstcn has also been conducting education and awareness programs.'
More information about this volunteer activity on their web-site, SSTCN. I urge interested readers to fully explore this simple and beautiful web-site. Detailing the kind of co-ordination and effort necessary, this is a wonderful example of a purely grassroots volunteer-driven conservation effort. Unsurprisingly, naysayers have questioned the utility of this project, which the volunteers have countered most persuasively and cogently. Rather than simply focus on numbers of turtles saved, this effort also educates the local population about these turtles and about wildlife conservation in general, and thus raises their general awareness about the importance of such measures. As well, in its years of existence, this volunteer program has inspired several to pursue careers in ecology and wildlife conservation.

In their own words again (1),
'Every weekend during the season, members of the general public and students from Madras accompany the SSTCN on ‘turtle walks’ when they are educated about sea turtles and conservation.
Why we do this a question that has often provoked heated debate both within and outside the group is the utility of such hard work and dedication just to release a few thousand hatchlings each year. This result comes after much effort in organisation, long nights walking beaches and never seeing a turtle, and sacrifices to time that could be otherwise spent in studies, with family, or in more conventional hobbies, not to mention the expenses often incurred to each participating student. When the problems that face the hatchling are seemingly insurmountable – it has been suggested that one in 1,000 or less survive to reach maturity – it is often questioned if all the effort is really helping the turtles. SSTCN’s success lies in its role as an outreach program rather than strictly as a wildlife conservation program (something that many members of the group, but not all, do realise).
Thanks to the students’ network, thousands of people in the Madras area have been on a turtle walk; many have seen hatchlings – which are indisputably amongst the most charismatic ambassadors of conservation, and a few have even had the fortune of seeing a nesting olive ridley. Many student members have been motivated to pursue careers in ecology, ecotourism, wildlife management and conservation.
Even if they are doomed, and sea turtles on the Madras coast do not survive the coastal development, fisheries and other threats, these turtles (and hatchlings) still help conservation through their singular contribution to education and outreach programmes.
They help motivate and shape young ecologists and conservationists who might go on to save turtles or other species of wildlife elsewhere. Though nesting along the Madras coast has been extremely low in some years (2.5 nests/ km), there does not appear to have been an overall decline over the last fifteen years. While the long term conservation program may have prevented a drastic decline thus far, the intensity of threats has increased. The main threat to adult sea turtles along much of the Indian coast is fishery related mortality, with about 10 – 20 dead ridleys washed ashore every season on the northern coast of Tamil Nadu. Fishing villages dot the entire coastline of the state, and opportunistic egg poaching by members of the fishing community and other communities living on the coast, as well as depredation by feral dogs are major problems.
Furthermore, as residential, middle class colonies spread along the coast, beachfront lighting and subsequent disorientation of hatchlings is becoming a serious problem along a greater stretch of this coast each year.'
The Amateur Scientist And Ornithology: The Example Of Migrant Watch, India's First Citizen Science Effort To Collect Ecological Information About Bird Migration
Every year from July to December, >300 bird species touch down in India on their way further south from Africa, China, Europe and Russia. A citizen science effort now called eBird India, Migrant Watch was funded by the Bangalore based National Center for Biological Sciences. According to Sahel Quader, Migrant Watch's founder (2),
'Arrival and departure dates are an effective way of measuring the effects of climate change on bird migration...Citizen science can tell us about global warming just by arming people with a pair of binoculars and a little training'
'In India just two years of citizen science have transformed shy homemakers, geeks and retirees into skilled outdoor scientists. They are marching out into the great outdoors, taking on the classic pose of nature watchers, feet planted on earth and necks craned up to identify the flutterer between leaves and swooshers in the skies.
Early walkers are certainly getting the birds. Aniket Bhatt, an infotech consultant, was the first to log on to Tracking bird migration across India in August 2007. He says, “All I could identify were seven rosy starlings in Ahmedabad.” Since then, over 800 volunteer watchers have documented 195 migrant species, landing, living and leaving India, with their sharp-eyed sightings and swift keystrokes. Helping them along are identification markers and pictures on this ‘open access’ online database.
Ramit Singhal, a shy 19-year-old, knows about the birds and the bees as well as everything about birds called bee-eaters. Right from their distinguishing black-eye-stripe to how they feed on wasps without feeling the sting.
Despite being colour blind and a birding novice 18 months ago, this soft-spoken engineering student has recorded 378 bird species across India. Though he can’t tell green from orange, he doesn’t confuse green bee-eaters with brown laughing doves. Size, call and patterns are enough. Quader calls Ramit “a citizen science superstar”.
Walking about in the highly polluted Okhla Bird Sanctuary in Noida, Uttar Pradesh, a wetland stopover for migrant birds where methane bubbles up from the waters, Ramit casually picks out gliding black kites, yellow-bellied prineas and striated babblers on reeds. It’s only the beady gaze of a red-necked falcon that turns him into a gawking teenager, who ogles this awesome raptor loudly exclaiming: “Oh man! This is my first one.”
“Initially, we chose nine species,” says Uttara Mendiratta, coordinator, MigrantWatch. These were picked out for commonness, wide distribution and identifiability. Or, birds outside our windows like barn swallows—the first migrants in Jul —and rosy starlings, their entire global population winters in India.
With birds from wetlands, grasslands and forests making marathon migrations here, “We’re uniquely positioned to get good information about the mysteries of migration and climate change,” says Gopi Sundar, India research associate for the International Crane Foundation.
The late Indira Gandhi was perhaps our most prominent citizen scientist. Each year when she sighted a black redstart, she’d mail an exultant letter to Salim Ali, the late ornithologist. Snigdha Kar, a Delhi-based climate activist is following in Mrs Gandhi’s tracks. “I’m looking everywhere for the pied-crested cuckoo,” says the young hobby birder. The arrival of this stark black-and-white bird from Africa coincides exactly with whimsical monsoon winds which lift it to our shores'
So there you have it, two spectacular examples of amateur science in action.

Bibliography
1. Students Sea Turtle Conservation Network History. History
2. Waiting for Godwits. Open magazine, Pramila N. Phatarphekar, August 8, 2009. http://www.openthemagazine.com/a...


https://www.quora.com/What-are-some-opportunities-for-amateur-scientists-to-contribute-to-real-scientific-progress-in-their-spare-time/answer/Tirumalai-Kamala


Sunday, October 23, 2016

How significant are Apple's medical apps to its future as a technology company?


Wearable devices (WD), mobile apps, other electronic systems, all these are new health monitoring tools, falling under the umbrella term mHealth (mobile health). They create new types of patient data called Patient Generated Health Data (PGHD). According to Shapiro et al (1),
'PGHD are health-related data, created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern'
According to Michael Fardis (2), PGHD include health and Rx history, symptoms, biometric data, lifestyle choices and other information. Main difference from traditional health data is patients record PGHD and are responsible for sharing it with those responsible for their care. According to Chan et al (3), over the coming years, mHealth in general and WD in particular could become indispensable in improving chronic disease monitoring. Systems monitored would be cardiovascular, nervous and respiratory, and chronic diseases covered would include cardiovascular diseases, Chronic obstructive pulmonary disease, diabetes, epilepsy, Parkinson's, autoimmune diseases such as Multiple sclerosis (MS), Rheumatoid arthritis (RA), to mention just a few obvious ones (for more possibilities, see table below from 2).

Thus, mHealth could fundamentally change chronic disease management and indeed biomedical research itself. Multiple sclerosis is a case in point. As Simpson et al state (4),
' Social media such as Twitter, mobile phone-based applications (apps), or even more pedestrian technology such as web based surveys or email, may provide a mechanism to more reliably track relapses. One could imagine an app that quickly queries relapse symptoms each day, and which automatically alerts investigators to follow up when a participant reports any level of symptoms indicative of relapse. Alternatively, a more participant-driven method like tweeting or emailing investigators about potential relapse symptoms could be utilised, avoiding the need to keep a study nurse on hand at particular hours to receive calls, and being sufficiently quick and simple to do that participants might be more likely to make that contact than if they were immediately having to do a phone assessment with a study nurse'
At its core, mHealth offers the following possibilities,
  • That more frequent health monitoring could trigger behavior change.
  • That it could help in better managing chronic diseases.
  • That it could help improve medical research.
However, thus far the way mHealth has evolved creates a binary that mirrors the mutually antagonistic forces that currently drive it, namely, commercial market value of customer-generated health data versus improving chronic disease management and biomedical research by helping develop Precision medicine. Thus, mHealth essentially divides into two non-overlapping features,
  1. Everyday health monitoring for the healthy.
  2. Precision medicine for the chronically ill and for medical research.
Reason these are non-overlapping goals is because they target different population segments and serve different purposes. This difference in kind is a conundrum because the medical value is unclear for #1 while being obvious for #2. Everyday Health Monitoring ≠ Precision Medicine (see figure below). 

  1. Healthy people frequently tracking some easily quantifiable health measurements (heart rate, pulse, blood pressure, sleep patterns, step tracking, posture, even pelvic floor health) raises the obvious issue of relevance. While its immediate medical value is ill-defined, it offers immediate commercial value for mHealth companies. Just sell WDs or apps to customers. Even if a customer doesn't share their data with their doctor or other healthcare advisers, there's always the possibility the device/app maker would sell it. Such user-generated health data is of obvious commercial value to health insurance companies, employers, affiliates, etc. Data may not be shared when the customer signs up for the service but there's no guarantee it will stay that way. For e.g., a 2015 Buzzfeed report by Ann Helen Petersen stated that Moves 'quietly modified its privacy policy to allow for sharing of data with “affiliates” after being acquired by Facebook in April 2014' (5). Issue of privacy is also an ever-present concern. Data may be anonymized when the customer signs up for the service but there's no guarantee it will stay that way.
  2. OTOH, applied to chronic diseases and medical research, mHealth could help improve patient segmentation, symptom tracking and assessment, and thereby help develop more precise medicine, i.e., better fulfill the promise of precision medicine in short. Its medical value is thus clear and immediate but commercial value is long-, not short-term. This is because value-added input of mHealth in existing health care management and medical research can only be discerned over time through trial and error.
Apple's 2-pronged approach, Healthkit targeting customers, and Researchkit targeting medical research, epitomizes this essential conundrum in mHealth technologies. Conundrum as in commercial value of Healthkit data generated by healthy users versus Researchkit helping develop precision medicine in chronic disease and biomedical research. Clearly a difference in kind.

How to de-link the profit motive from collecting and selling health data generated from WDs and other health-monitoring apps from its potential to help develop precision medicine? If past is any predictor of the future, this won't happen without a fight followed by government stepping in to regulate this space. As for Apple, its future and future legal wrangles in mHealth will probably be shaped by which of these two mutually exclusive paths, Healthkit versus Researchkit, it decides to prioritize.

Bibliography
1. Patient-Generated Health Data. White Paper. Michael Shapiro, Douglas Johnston, Jonathan Wald, Donald Mon. April 2012. https://www.healthit.gov/sites/d...
2. Investigation of Models for the integration of Patient Generated Health Data within Swedish Multiple Sclerosis Quality Register. Michael Fardis, Master's Thesis. 2015. http://ki.se/sites/default/files...
3. Chan, Marie, et al. "Smart wearable systems: Current status and future challenges." Artificial intelligence in medicine 56.3 (2012): 137-156. https://www.researchgate.net/pro...
4. Simpson, Steve, Bruce V. Taylor, and Ingrid Van der Mei. "The role of epidemiology in MS research: Past successes, current challenges and future potential." Multiple Sclerosis Journal 21.8 (2015): 969-977. Past successes, current challenges and future potential
5. Big Mother Is watching You. Anne Helen Petersen, BuzzFeed News, Jan 1, 2015. Big Mother Is Watching You: The Track-Everything Revolution Is Here Whether You Want It Or Not


https://www.quora.com/How-significant-are-Apples-medical-apps-to-its-future-as-a-technology-company/answer/Tirumalai-Kamala