What would you want to do with genome sequence data?

All opinions are my own and do not necessarily reflect those of Novo Nordisk

In the same issue of Nature that reported the HeLa sequence and the NIH agreement, Martin Bobrow of the University of Cambridge wrote a column discussing how we as a society choose to balance individual privacy and public good that arises from making data gathered from private samples public.

We are entering a strikingly different period of biological and biomedical research, as a number of different areas of research and technology are reaching a critical point of cross-fertilization.  Moore’s law has resulted in computers of amazing power that can analyze really stupendous amounts of data.  I was at the Seattle Museum of History and Industry recently, and in one of their displays they showed a 1980 IBM PC, and while showing it to my son, I pulled out my smartphone and told him that my phone today is just as powerful as that computer was.  Of course, I was wrong.  My phone is actually about 2.5 orders of magnitude more powerful than that PC. Continue reading

Hanging with the herd, for the immunity of it all

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

When I hear about events such as the recent outbreak of measles among a small group in Texas, I am reminded of how complex, complicated and difficult public health efforts can be. In the US, for example, there are conflicting imperatives:  the rights of people to practice their beliefs versus the right of the community to be protected against preventable health threats.  This particular situation involved members of a church congregation, many of whom had not gotten vaccinated for measles due to worries about a link between autism and the Measles-Mumps-Rubella (MMR) vaccine.  While no scientific evidence has been found to support any such link, many had chosen not to be vaccinated “just in case.”

One day I hope to write about the link between the phenomenon of science denial and personal identity (one perspective can be seen here), but for now I just want to point out how this event and a recent publication by the Centers for Disease Control (CDC) on rotavirus vaccines demonstrate nicely the concept of herd immunity (article behind paywall, but writeup here).  There are different usage patterns for the term, so I’ll say up front I am using “herd immunity” to describe not just the proportion of individuals within a population who are immunized to a given pathogen but also the indirect effects for non-immunized individuals.  The term was first used in a publication in 1923, by Topley and Wilson, in the context of how to describe the host side of their studies in bacterial infection among mice.  The concept later gained mathematical underpinnings, including formulas describing how the different ratios of vaccinated to nonvaccinated individuals defines the degree of herd immunity depending upon how infectious a disease agent is. Continue reading

The “good,” the “difficult” and the “reality”: patients in the digital age

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

With apologies to Sergio Leone.  And to you, for making you read that really bad pun.  Just move along.

In an engaging and thought-provoking perspective piece in the New England Journal of Medicine, Dr. Louise Aronson described her experience in getting treatment for her father, who was suffering from low blood pressure and other health issues.  Her father was admitted to the hospital and went through examinations and fluctuations in his health during his stay.  He seemed to stabilize but then his blood pressure dropped again and Dr. Aronson asked for someone to come and check on him.  The staff was polite but non-committal and she decided to perform an exam on him herself to check if he had internal bleeding.  He did, she obtained evidence, and her father received rapid care to prevent further blood loss. 

She relayed this story in the context of how health care providers often bin patients and their support networks into “good” and “difficult” categories, based on how much and how often those patients acquiesce rather than challenge or even seek information about ongoing treatments.  As she describes it, the staff “were polite, but their unspoken message was that they were working hard, my father wasn’t their only patient, and they had appropriately prioritized their tasks. ” Her message was that the medical profession needs a cultural shift,in which patients and their families whom are more actively engaged in their care are seen as an asset, not a detriment to medical practice.  She also suggested some practical elements that would help this, including tracking more clearly when patient engagement occurs and rewarding it through changes in billing codes and practices. Continue reading

What $85 million could get the NFL: thinking about the NFL concussion settlement

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

Yesterday the NFL and the NFL Players Association reached a settlement concerning compensation for concussions and other football-related injuries.  The impending lawsuit was brought by former NFL players who claimed, among other things, that the NFL downplayed the risk of concussions despite having knowledge of their effects and also did not do all it could to help former players.

The total amount earmarked for the settlement is reported to be $765 million dollars, with the vast majority ($675 million) in a fund to support former players and families in dealing with the aftermath of concussions.  Commentators have noted that this appears to be a great victory for the NFL.  First, the amount of money is less than many expected even with a settlement.  Second, the NFL did not have to go through discovery, which would have laid open exactly what the NFL did know about concussions and possible side effects, as well as potentially other damaging information that, once released in court, could never be private again.

It seems likely that those who were bringing forward the suit settled because they were motivated to help the most needy members of their group.  Many former NFL players are suffering dementia and lingering aftereffects from their playing days.  Some families of deceased players will also benefit.  The former player pool can’t really afford to wait for the long protracted time a trial and subsequent appeals would take since in the interim many would fall into poverty and even poorer health; some could also die. Continue reading

Gaming to help beat cancer

All opinions my own and do not necessarily reflect those of Novo Nordisk.

Plants versus Zombies 2: It’s About Time just came out.  My son spent a significant fraction of his weekend playing it on my iPad.  Okay, fine, I did too.  It’s a lot of fun, it challenges (but not too much) and it teaches you facts like, uh, like that Egyptian society in the past had a real fascination with pyramids.

So it’s not the most educational of games.

Which is why I was stoked to see the writeup of Re-Mission 2 in FierceBiotechIT.  This game takes elements of cancer treatment and places them in the context of a game that both educates patients undergoing cancer treatment as well as provides them a way to feel more in control of their situation.  Version 2 also builds on the impact of the first Re-Mission game, which showed success in improving adherence of patients to their treatment regimens.  Adherence is an important element of medical treatment and trying to make sure people take their medicines is an ongoing problem as we try to improve the efficiency of our healthcare systems.

In addition to behavioral metrics being changed by Re-Mission, functional Magnetic Resonance Imaging (fMRI) also showed that playing the game activated brain areas associated with motivation–again, tying gameplay to elements of adherence.  Some brain region activations also correlated with subject described positive and improved attitudes towards chemotherapy after gameplay. Continue reading