Recently out of the blue in spite of Canadian anti-spam laws I have been receiving email updates from the Journal of Medical Internet Research. This is no problem with me. I think the JMIR is the best eHealth journal out there. I think I may even have applied for a job doing web stuff for them once. I have 8 years experience as a technical editor for an open access academic journal plus a diploma in web design and development. Anyway, if there is one eHealth journal I would read all the time and / or want to be published in, it would be the JMIR.
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Hacking Health in Hamilton Ontario - Let's hear that pitch!
What compelled me to register for a weekend Health Hackathon? Anyway, I could soon be up to my ears in it. A pubmed search on Health Hack...
Showing posts with label Research. Show all posts
Showing posts with label Research. Show all posts
Tuesday, June 28, 2016
Monday, March 28, 2016
Sharing your patient record can help researchers save and improve lives
I am just copying and pasting and posting this article and giving all credit due. I am thinking however along these same lines for an article on researching health records, big data analytics, and consent for the use of patient records for research. Mostly I have been studying research data management plans and the trend towards sharing research data on well preserved data library repositories. I'd like to find out where the health data repositories are and I don't just mean with organizations like ICES.
http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Patient-records/index.htm
The NHS is creating a new system to share information from patient
records to improve care and research, while protecting each person's
confidentiality. Everybody in England can choose how information from
their patient record is shared in this new system.
As you make up your mind about sharing your records, more than 40 medical research charities and organisations have joined together to tell you more about how your information can be used for medical research and help you find out more about how your information will be kept safe.
Every time you visit an NHS hospital or your GP, information about your health is recorded and stored in your patient record. The NHS uses this information to help provide the best clinical care for you.
Because your patient record contains personal information about your health, it must be handled very carefully and accessed safely and securely, protecting your confidentiality.
Information from your record can also be used to improve healthcare delivery for all patients, and by health researchers who use it to help them understand the causes of disease and to find better treatments.
Update
NHS England has announced that it plans to delay the collection of data from GP surgeries until the autumn and that it will work with patients and professional groups to ensure information is accessible and reaches all sections of the community in order to build confidence in the initiative.
We understand this decision as we believe that, whilst sharing information from medical records is important for medical research and healthcare delivery, the systems for achieving this need to be trusted and understood by everyone. This delay should allow for fuller communications that ensure people are aware of how their data will be collected and used, the safeguards that are in place, and how to exercise their right to object.
http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Patient-records/index.htm
Sharing your patient record can help researchers save and improve lives
As you make up your mind about sharing your records, more than 40 medical research charities and organisations have joined together to tell you more about how your information can be used for medical research and help you find out more about how your information will be kept safe.
Every time you visit an NHS hospital or your GP, information about your health is recorded and stored in your patient record. The NHS uses this information to help provide the best clinical care for you.
Because your patient record contains personal information about your health, it must be handled very carefully and accessed safely and securely, protecting your confidentiality.
Information from your record can also be used to improve healthcare delivery for all patients, and by health researchers who use it to help them understand the causes of disease and to find better treatments.
Update
NHS England has announced that it plans to delay the collection of data from GP surgeries until the autumn and that it will work with patients and professional groups to ensure information is accessible and reaches all sections of the community in order to build confidence in the initiative.
We understand this decision as we believe that, whilst sharing information from medical records is important for medical research and healthcare delivery, the systems for achieving this need to be trusted and understood by everyone. This delay should allow for fuller communications that ensure people are aware of how their data will be collected and used, the safeguards that are in place, and how to exercise their right to object.
Your choices
The NHS is contacting you now with information about the changes and your options
FAQs
How researchers may access your information
Why do researchers need your information?
Read examples of how researchers have used patient information to save and improve lives
Find out more
Links to useful websites
Saturday, December 19, 2015
Fall Prevention - From the Optimal Aging Portal
I volunteer with McMaster Family Medicine in the Tapestry program. We visit seniors who have volunteered to be in this research study. We bring an iPad and take a health survey. We also ask if they want to sign in to the McMaster Personal Health Record, which is integrated into the OSCAR EMR. Many of the clients we have met have had falls.
Just saw this article on the McMaster Optimal Aging Portal about fall prevention. Because I have practiced Tai Chi for more several decades, and because I value the work of the Portal and the plain language systematic reviews and evidence based research they present to the public, I will post this here. It would be great if more people, both citizens and health professionals, could subscribe to the Portal.
Just saw this article on the McMaster Optimal Aging Portal about fall prevention. Because I have practiced Tai Chi for more several decades, and because I value the work of the Portal and the plain language systematic reviews and evidence based research they present to the public, I will post this here. It would be great if more people, both citizens and health professionals, could subscribe to the Portal.
Steady on your feet: New ways to improve balance and avoid falls
Dec 18, 2015
When it comes to keeping your feet safely on the ground – metaphorically and literally – it’s all about balance. But like many other things we take for granted when we’re young (strength, endurance, bone density, a full head of hair...) our sense of balance declines as we age. That’s one reason why older adults are at greater risk of falling and potentially becoming seriously hurt or even dying as a result (1).
Past research has shown that regular physical activity can help prevent falls, particularly when it includes exercises and movements designed to improve balance (2). Tai Chi for example, is recommended for its various benefits, including improving strength and balance through slow, controlled movements (3,4).
But if Tai Chi isn’t for you, there are other options you many want to consider. One recent systematic review of six studies measured the benefits of Pilates, a mind-body exercise program that has been popular since the early 20thcentury. Like Tai Chi, it involves controlled movements and concentrates on flexibility, strength, posture and breathing (5). Each study included older adult participants who took part in group Pilates sessions. The exercises varied (mat exercises as well as exercises using elastic bands, weights or other equipment), and included at least 2hrs of Pilates each week. The study participants were compared with a control group who kept up their usual daily activities but did not take Pilates.
Another emerging form of balance training that is gaining attention for its novel approach is “perturbation-based balance training” or balance recovery training. It focuses on improving people’s reaction time and helping them better recover from a loss of balance (6). Training can include equipment (such as moving platforms), or manual interference (such as nudges by a therapist) to enhance your ability to react and stop yourself from falling.
A recent systematic review of eight randomized controlled trials examined whether perturbation-based balance training lowers the risk for falls in older adults as well as people with neurological disorders such as Parkinson’s disease (6). More than 400 people between the ages of 50 and 98 took part in perturbation-based balance training and were compared with those in control group who participated in other types of balance enhancing exercises.
What the research tells us
Both Pilates and perturbation-based balance training appear to be promising strategies for helping older adults avoid falls and the resulting serious consequences.
Despite limitations in the quality of the Pilates studies the results suggest that Pilates is a promising way to help improve balance (5). So far the evidence on perturbation-based balance training is also encouraging: participants completing the training reported fewer falls and were less likely to fall, compared with those in the control groups (6). Further research is needed but there is cautious optimism that this approach may help people react and recover their balance more quickly so that a slip or trip doesn’t necessarily have to end in a fall.
Not sure which balance training exercises are best for you? Ask your doctor or physical therapist, or give these activities a try! At the same time, be aware of hazards and take the necessary precautions (e.g. good lighting, clear pathways, secure handrails etc.) so that you remain surefooted and safe as you enjoy an active lifestyle (7).
The Bottom Line
- Older adults have a greater chance of falling and experiencing serious injury or even death.
- Exercises aimed at improving balance have been shown to help prevent falls.
- Initial studies of Pilates exercises (involving controlled movements to build flexibility, strength and posture) suggest it has the potential to improve balance.
- Balance-recovery training aims to improve reaction time after a loss of balance and also appears to help lower risk of falls.
- More high quality studies are needed to learn more about the benefits of Pilates and balance-recovery training.
References
- Centers for Disease Control and Prevention (CDC). Falls among older adults: an overview. [Internet] 2012. [cited Dec 2015] Available from: http://www.cdc.gov/homeandrecreationsafety/falls/adultfalls.html.
- Gillespie LD, Robertson MC, Gillespie WJ et al. Interventions for preventing falls in older people living in the community. Cochrane Database Syst Rev. 2012; 9:CD.007146.
- Mat S, Tan MP, Kamaruzzaman SB, et al. Physical therapies for improving balance and reducing falls risk in osteoarthritis of the knee: a systematic review. Age Ageing. 2015; 44:16-24.
- Leung DP, Chan CK, Tsang HW, et al. Tai chi as an intervention to improve balance and reduce falls in older adults: A systematic and meta-analytical review. Altern Ther Health Med. 2011; 17:40-48.
- Barker, AL, Bird M, Talevki J. Effects of Pilates exercise for improving balance in older adults: A systematic review with meta-analysis. Arch Phys Med Rehabil. 2015; 96:715-723.
- Mansfield A, Wong JS, Bryce J et al. Does perturbation-based balance training prevent falls? Systematic review and meta-analysis of preliminary randomized controlled trials. Phys Ther. 2015; 95:700-709.
- Public Health Agency of Canada (PHAC). You Can Prevent Falls. Ottawa, Canada. [Internet] 2011. [cited Dec 4, 2015] Available from: http://www.phac-aspc.gc.ca/seniors-aines/publications/public/injury-blessure/prevent-eviter/index-eng.php
AUTHOR DETAILS
Optimal Aging Portal Blog Team
The latest scientific evidence on this topic was reviewed by the McMaster Optimal Aging team. Blog Posts are written by a professional writer, assessed for accuracy by Dr. Maureen Dobbins, an expert in interpreting and communicating the scientific literature, and edited by a professional editor. There are no conflicts of interest.
Sunday, March 15, 2015
Tuesday, February 25, 2014
The "sousveillance" world of Steve Mann
When I studied the use of RFID in healthcare I was amazed at the possibilities for this technology and it's essential humanness. An RFID barcode is much safer for an infirm patient because the identification or drug dosage on the RFID signal can be picked up without having to move the patient. A barcode, on the other hand, might be on a wrist under a sleeping patient, so they would have to be turned over in order to scan the bar code in line of sight. RFID technology was also great for keeping track of physical assets like infusion pumps, and inventory replenishment systems. On the other hand, keeping track of people presented some ethical and privacy concerns because people would be under the impression that they would be constantly under surveillance. When the word "surveillance" is used, Big Brother rears its ugly head.
Surveillance needn't be a fearful word even though it has a strong presence in security organizations and anti-terrorism. There are forms of surveillance in public health that can be beneficial for the health and welfare of society, such as syndromic surveillance, even though that too may have had some origins in state security, i.e. finding out where that anthrax threat was.
One thing I like about the wearable computer work of Steve Mann is his bold claim that the eye-tap or video glasses he created and wears present to society a form of what he calls "sousveillance", which is a much more nuanced, benign or human form of it's evil cousin - mentioned above. Sousveillance is an understated way of trying to balance the power of who is watching who. For some totally unknown reason it reminds me of the anti-sus dub poetry of Linton Kwesi Johnson. The anti-sus laws, or suspected person vagrancy laws in 19th century Britain might have nothing to do with sousveillance, but I am sure Steve Mann has had that feeling of being considered a suspicious and unwelcome person. Racial profiling for cyborgs? His McVeillance experience is indicative of that.
Now try to imagine a year in the future when everyone is wearing eye-tap video devices of that type Steve Mann and then Google developed. Maybe this is in 2020,( appropriate for seeing perfectly), and maybe it is not, but won't this mean that everyone we see on the street, and their dog, will be the equivalent of a Google Street View with a 24/7 refresh rate? And then ask yourself what does this do for for privacy laws, and you will have to wonder why the privacy commissioner of Canada wrote a letter to the lawyers at Google in 2007 to say that Google Street View would break all of Canada's privacy laws if it was implemented! It is interesting to try and imagine this future and one science fiction book I read by Charles Stross, called Halting State did exactly that. It was a murder mystery inside a video game but the real life police all had video recording visors they were obligated and/or controlled to wear on the job, recording all the visual details of their day to day investigations. Surveillance technology may not have been extended to all citizenry, but now the details are slipping away on me - read it a few years ago.
Notions of privacy will be changing beyond a doubt. Even now in different cultures there are different notions of privacy and proxemics. I think it was Iceland that lists your tax return information in the phone book or something like that. Imagine if we all started using Augmented Reality eye-tap devices, like the ones on the veillance.org website which are tied into redundantly backed-up servers. Imagine people walking through hospitals with such wearable devices scanning people sitting in the STD clinic waiting rooms. Personal space is being violated in terms of personal health information (PHI). The technology is wonderful though. As Personal Health Records are being developed (even with HL7 standards) a problem area is how to capture and store personal information submitted by the patient, not the physician, and how to make that information intelligible. Streams of data from daily blood tests, BP, and now possibly wearable computer video images, needs to managed and made relevant somehow. On the other hand, IT and policy specialists in healthcare have mostly normalized the Bring Your Own Device (BYOD) phenomenon.
Another notion of privacy that might need to change is the idea that PHI is always private. Some people are already posting their PHI on facebook and they don't care if it is public. In rare cases we have even heard that this has saved lives. I have personally heard research participants with rare and chronic health conditions who are posting their personal health records as widely on the internet as possible in order to obtain possible help or insight for future research. It is technologically possible I suppose to put PHI and other forms of identification into Augmented Reality "fields of vision" for other persons with wearable devices to readily pick up. The only thing stopping people from doing that is the notions of privacy and their willingness to consent to have that out there in the public domain.
I like Steve's distinction (on wikipedia - or brilliant IEEE article ) between surveillance and sousveillance:
It is within this realm of "personal sousveillance" that the work of Steve Mann as applied to health informatics, is really to going to shine. Steve was one of the original group who helped secure funding for the Centre for Global eHealth Innovation at the University of Toronto, which is a world leading health informatics incubator. Steve has also done some research using sousveillance on hand hygiene to reduce hospital infections. There are other more bold applications, of course, like using google glass in surgeries or dentistries for training and/or assisted learning.
In my own small way I am also trying to think through the "legal, ethical and policy issues", as Steve says, here on this blog. Those at the Institute for Ethics of Emerging Technology are also doing that "in spades", and there is a recent article about Steve Mann and sousveillance on it (here). Steve has recently argued for "legal" rights for sousveillance in an editorial for MIT technology review. Veilliance has become a study in itself, in all it's various forms, as Steve leads a Veillance conference and research group, which it would appear I made a blog post about last year< here >.
I could also blend in here a discussion related to the ethics of self-experimentation (and hat tip again to the folks on the CAREB Linkedin group for that article). Mostly we have known about clinical self-experimentation, and in social sciences/humanities there are '"autoethnographies", but now with the development of new technologies people are trying their own DYI experiments. I saw an TVO Agenda program (Mysteries of the Mind - Tomorrow's Brain ) that discussed the health benefits for improving cognitive function and mental health using Transcranial Magnetic Stimulation (TMS) where the panel experts played a youtube video they had discovered and discussed the guy in it who hooked his brain up to his own home-made TMS device. In the video we see the guy, when he turns on the electricity, explaining: "Just saw a white flash". So don't do this at home kids!
Steve Mann is not a guinea pig. He isn't a research subject. He is the subject of his own research. Developing and wearing computers is something he has done since he was a kid, so he is just using evolutionary momentum for whatever agile developments that improve his cybernetic state of well being. An oversight committee at his place of employment might recommend a technology ethics review, but we have to think that Steve is largely "self-employed" with this system, "dug in like a tick", and there ain't no separating him from this life experiment with digitally enhanced awareness. Anyway, Steve would fight back against anything "oversight". The dangers of any research involving humans is that researchers to a certain extent "have blinders on" and are biased towards their own methodologies and perceptions of risk, and thus lose objectivity.
I don't know who said "the pull of the future is greater than the push from the past", but I do remember the person who I heard it from. Whoever it was must have imagined some strange and distant world waiting to be born. That is the sousveillance world of Steve Mann.
Surveillance needn't be a fearful word even though it has a strong presence in security organizations and anti-terrorism. There are forms of surveillance in public health that can be beneficial for the health and welfare of society, such as syndromic surveillance, even though that too may have had some origins in state security, i.e. finding out where that anthrax threat was.
One thing I like about the wearable computer work of Steve Mann is his bold claim that the eye-tap or video glasses he created and wears present to society a form of what he calls "sousveillance", which is a much more nuanced, benign or human form of it's evil cousin - mentioned above. Sousveillance is an understated way of trying to balance the power of who is watching who. For some totally unknown reason it reminds me of the anti-sus dub poetry of Linton Kwesi Johnson. The anti-sus laws, or suspected person vagrancy laws in 19th century Britain might have nothing to do with sousveillance, but I am sure Steve Mann has had that feeling of being considered a suspicious and unwelcome person. Racial profiling for cyborgs? His McVeillance experience is indicative of that.
Now try to imagine a year in the future when everyone is wearing eye-tap video devices of that type Steve Mann and then Google developed. Maybe this is in 2020,( appropriate for seeing perfectly), and maybe it is not, but won't this mean that everyone we see on the street, and their dog, will be the equivalent of a Google Street View with a 24/7 refresh rate? And then ask yourself what does this do for for privacy laws, and you will have to wonder why the privacy commissioner of Canada wrote a letter to the lawyers at Google in 2007 to say that Google Street View would break all of Canada's privacy laws if it was implemented! It is interesting to try and imagine this future and one science fiction book I read by Charles Stross, called Halting State did exactly that. It was a murder mystery inside a video game but the real life police all had video recording visors they were obligated and/or controlled to wear on the job, recording all the visual details of their day to day investigations. Surveillance technology may not have been extended to all citizenry, but now the details are slipping away on me - read it a few years ago.
Notions of privacy will be changing beyond a doubt. Even now in different cultures there are different notions of privacy and proxemics. I think it was Iceland that lists your tax return information in the phone book or something like that. Imagine if we all started using Augmented Reality eye-tap devices, like the ones on the veillance.org website which are tied into redundantly backed-up servers. Imagine people walking through hospitals with such wearable devices scanning people sitting in the STD clinic waiting rooms. Personal space is being violated in terms of personal health information (PHI). The technology is wonderful though. As Personal Health Records are being developed (even with HL7 standards) a problem area is how to capture and store personal information submitted by the patient, not the physician, and how to make that information intelligible. Streams of data from daily blood tests, BP, and now possibly wearable computer video images, needs to managed and made relevant somehow. On the other hand, IT and policy specialists in healthcare have mostly normalized the Bring Your Own Device (BYOD) phenomenon.
Another notion of privacy that might need to change is the idea that PHI is always private. Some people are already posting their PHI on facebook and they don't care if it is public. In rare cases we have even heard that this has saved lives. I have personally heard research participants with rare and chronic health conditions who are posting their personal health records as widely on the internet as possible in order to obtain possible help or insight for future research. It is technologically possible I suppose to put PHI and other forms of identification into Augmented Reality "fields of vision" for other persons with wearable devices to readily pick up. The only thing stopping people from doing that is the notions of privacy and their willingness to consent to have that out there in the public domain.
I like Steve's distinction (on wikipedia - or brilliant IEEE article ) between surveillance and sousveillance:
Personal sousveillance is the art, science, and technology of personal experience capture, processing, storage, retrieval, and transmission, such as lifelong audiovisual recording by way of cybernetic prosthetics, such as seeing-aids, visual memory aids, and the like. Even today's personal sousveillance technologies like camera phones and weblogs tend to build a sense of community, in contrast to surveillance that some have said is corrosive to community.[29]
The legal, ethical, and policy issues surrounding personal sousveillance are largely yet to be explored, but there are close parallels to the social and legal norms surrounding recording of telephone conversations. When one or more parties to the conversation record it, we call that sousveillance, whereas when the conversation is recorded by a person who is not a party to the conversation (such as a prison guard violating a client-lawyer relationship), we call the recording "surveillance".
It is within this realm of "personal sousveillance" that the work of Steve Mann as applied to health informatics, is really to going to shine. Steve was one of the original group who helped secure funding for the Centre for Global eHealth Innovation at the University of Toronto, which is a world leading health informatics incubator. Steve has also done some research using sousveillance on hand hygiene to reduce hospital infections. There are other more bold applications, of course, like using google glass in surgeries or dentistries for training and/or assisted learning.
In my own small way I am also trying to think through the "legal, ethical and policy issues", as Steve says, here on this blog. Those at the Institute for Ethics of Emerging Technology are also doing that "in spades", and there is a recent article about Steve Mann and sousveillance on it (here). Steve has recently argued for "legal" rights for sousveillance in an editorial for MIT technology review. Veilliance has become a study in itself, in all it's various forms, as Steve leads a Veillance conference and research group, which it would appear I made a blog post about last year< here >.
I could also blend in here a discussion related to the ethics of self-experimentation (and hat tip again to the folks on the CAREB Linkedin group for that article). Mostly we have known about clinical self-experimentation, and in social sciences/humanities there are '"autoethnographies", but now with the development of new technologies people are trying their own DYI experiments. I saw an TVO Agenda program (Mysteries of the Mind - Tomorrow's Brain ) that discussed the health benefits for improving cognitive function and mental health using Transcranial Magnetic Stimulation (TMS) where the panel experts played a youtube video they had discovered and discussed the guy in it who hooked his brain up to his own home-made TMS device. In the video we see the guy, when he turns on the electricity, explaining: "Just saw a white flash". So don't do this at home kids!
Steve Mann is not a guinea pig. He isn't a research subject. He is the subject of his own research. Developing and wearing computers is something he has done since he was a kid, so he is just using evolutionary momentum for whatever agile developments that improve his cybernetic state of well being. An oversight committee at his place of employment might recommend a technology ethics review, but we have to think that Steve is largely "self-employed" with this system, "dug in like a tick", and there ain't no separating him from this life experiment with digitally enhanced awareness. Anyway, Steve would fight back against anything "oversight". The dangers of any research involving humans is that researchers to a certain extent "have blinders on" and are biased towards their own methodologies and perceptions of risk, and thus lose objectivity.
I don't know who said "the pull of the future is greater than the push from the past", but I do remember the person who I heard it from. Whoever it was must have imagined some strange and distant world waiting to be born. That is the sousveillance world of Steve Mann.
Friday, January 3, 2014
Research Ethics Board Decision Making Maximers or Satificers
A fellow McMaster eHealth M.Sc. graduate, Yervant Terzian, has an interesting post on his blog "Yervant's Musings: Healthcare Through a Patient's Lens". He sent me an email asking what I thought because I attended the same conference of research ethics board professionals - the Canadian Association of Research Ethics Boards (CAREB). Yervant is now a community member of a research ethics board and I would like to welcome him to my world! I have been a research ethics board administrative professional for coming up to 14 continuous years.
Here is the link to Yervant's post:
http://yterzian.wordpress.com/2013/12/23/are-reb-members-maximizers-or-satisficers-ethics/
The talk given by Dr. Ivor Pritchard was aimed at REB professionals. Dr. Pritchord is well known in US bioethics and research ethics professional organizations (acting director of US Human Health Services Office of Human Research Protections) , but has been invited to speak at Canadian REB conferences before. I believe that he holds a PhD in Philosophy. His theory revolves around research on decision making aiming to illustrate how REB members make decisions when they review research projects for clearance. I don't believe the basis of the talk was on his own research into this subject though I may be wrong.
Let me first say that I think there needs to be more research on REBs - on all aspects of it. Research by Dr. Will van den Hoonaard on Canadian REBs was very valuable on describing the kinds of REB cultures that exist in Canada, as well as arguing how a biomedical basis formed the basis for the ethics policies - not easily extended to social science and qualitative research. There has been some research by Rachel Zand, current CAREB president, on how to educate, train and retain REB members. My colleague Dr. Brian Detlor and I presented on own research on REB information systems used by Canadian REBs at this very same conference. We have just recently posted the results on our website <here> but this will also be posted to the CAREB website this month I am told.
I agree with Yervant that the Maximizer vs Satisficer notion on REB decision making might not be the best way to describe the behaviour of REB members because it comes from a consumer behaviour model. Members of REBs are mostly volunteers, and some ethics board gurus have argued that unpaid volunteer membership on REBs is the only way to preserve ethical integrity in this work. True though, that REB members need incentives to do the ever increasing work load. True though, that altruism alone ought to be the guiding light for contributing to the integrity of research. True it is, that the behavioural effectiveness of REB members is needed more often than the efficiency of REB systems.
Applying an economic "Rational Choice Theory" to REB metrics is one way to approach an analysis for insight. However, I think the real effectiveness for this line of reasoning is more applicable for the ethics of healthcare resource allocation, which is the subject of extensive bioethical debate. Rational choice, as well as maximizers and satisficers, can be applied there, and the scenarios are very similar. Making decisions for how healthcare resources can be allocated, especially in underdeveloped countries, is heart breaking at the best of times. Should one patient be allowed a million dollar support system for an extremely rare condition when the same money can be allocated to improve the quality of life for thousands of others? Closer to home, why is physiotherapy not covered by Ontario health insurance? Why are dental services not covered? etc.
The scenarios for decision making used in our break out groups at the conference that Dr. Pritchard presented and that Yervant discusses are life and death decision scenarios. Not all REBs review research that involves life or death risks. Mostly it is medical REBs that review clinical trials involving experimental drugs for persons with terminal or chronic illness that need to decide on risks of living or dying. The risks in social science and qualitative or behavioural research are not so overtly black or white or of that nature.
Another way to look at this is that REB members as Maximizers are more likely to engage in "ethics creep" - spending a disproportionate amount of time on the minutiae of a protocol instead of the major issues. On the other hand, it would be good to have Maximizers when there are research proposals that do have major issues. For the 90% of social behavioural research reviewed by social science/qualitiatve/behavioural REBs, being a Satisficer is the way to go, because this 90% will be research that is not greater than minimal risk, or risk experienced by participants in their everyday life. Ethics review can be done on a Satisficers' "it is good enough" basis, even though it is not desirable to do so for the purposes of maintaining high academic standards of research quality.
Yervant proposes a "Traits" approach to examining how REB Members make decisions in the review of ethics applications. Perhaps that might be interesting, but I am not sure how it would improve the effectiveness of REB review. Would REB administrators start to recruit new members based on certain "traits"?
Certainly, we don't want REB members who will try to exert their own agendas, biases, etc., or who would otherwise be disruptive at meetings, or totally non-present wrapped in a cocoon of silence. In fact, REB members are assigned research ethics applications to review based on their disciplinary expertise first of all, and secondly, according to known personal interests or other areas of knowledge that they might possess. A theory of "Expert Systems" might also be applicable here in case REB members are ever replaced with IBM Watson type systems.
Anyway, I could probably write more like this for a while, but the relevance for eHealth is drifting away. Thanks very much Yervant for applying your insights to the work of REBs!
Here is the link to Yervant's post:
http://yterzian.wordpress.com/2013/12/23/are-reb-members-maximizers-or-satisficers-ethics/
The talk given by Dr. Ivor Pritchard was aimed at REB professionals. Dr. Pritchord is well known in US bioethics and research ethics professional organizations (acting director of US Human Health Services Office of Human Research Protections) , but has been invited to speak at Canadian REB conferences before. I believe that he holds a PhD in Philosophy. His theory revolves around research on decision making aiming to illustrate how REB members make decisions when they review research projects for clearance. I don't believe the basis of the talk was on his own research into this subject though I may be wrong.
Let me first say that I think there needs to be more research on REBs - on all aspects of it. Research by Dr. Will van den Hoonaard on Canadian REBs was very valuable on describing the kinds of REB cultures that exist in Canada, as well as arguing how a biomedical basis formed the basis for the ethics policies - not easily extended to social science and qualitative research. There has been some research by Rachel Zand, current CAREB president, on how to educate, train and retain REB members. My colleague Dr. Brian Detlor and I presented on own research on REB information systems used by Canadian REBs at this very same conference. We have just recently posted the results on our website <here> but this will also be posted to the CAREB website this month I am told.
I agree with Yervant that the Maximizer vs Satisficer notion on REB decision making might not be the best way to describe the behaviour of REB members because it comes from a consumer behaviour model. Members of REBs are mostly volunteers, and some ethics board gurus have argued that unpaid volunteer membership on REBs is the only way to preserve ethical integrity in this work. True though, that REB members need incentives to do the ever increasing work load. True though, that altruism alone ought to be the guiding light for contributing to the integrity of research. True it is, that the behavioural effectiveness of REB members is needed more often than the efficiency of REB systems.
Applying an economic "Rational Choice Theory" to REB metrics is one way to approach an analysis for insight. However, I think the real effectiveness for this line of reasoning is more applicable for the ethics of healthcare resource allocation, which is the subject of extensive bioethical debate. Rational choice, as well as maximizers and satisficers, can be applied there, and the scenarios are very similar. Making decisions for how healthcare resources can be allocated, especially in underdeveloped countries, is heart breaking at the best of times. Should one patient be allowed a million dollar support system for an extremely rare condition when the same money can be allocated to improve the quality of life for thousands of others? Closer to home, why is physiotherapy not covered by Ontario health insurance? Why are dental services not covered? etc.
The scenarios for decision making used in our break out groups at the conference that Dr. Pritchard presented and that Yervant discusses are life and death decision scenarios. Not all REBs review research that involves life or death risks. Mostly it is medical REBs that review clinical trials involving experimental drugs for persons with terminal or chronic illness that need to decide on risks of living or dying. The risks in social science and qualitative or behavioural research are not so overtly black or white or of that nature.
Another way to look at this is that REB members as Maximizers are more likely to engage in "ethics creep" - spending a disproportionate amount of time on the minutiae of a protocol instead of the major issues. On the other hand, it would be good to have Maximizers when there are research proposals that do have major issues. For the 90% of social behavioural research reviewed by social science/qualitiatve/behavioural REBs, being a Satisficer is the way to go, because this 90% will be research that is not greater than minimal risk, or risk experienced by participants in their everyday life. Ethics review can be done on a Satisficers' "it is good enough" basis, even though it is not desirable to do so for the purposes of maintaining high academic standards of research quality.
Yervant proposes a "Traits" approach to examining how REB Members make decisions in the review of ethics applications. Perhaps that might be interesting, but I am not sure how it would improve the effectiveness of REB review. Would REB administrators start to recruit new members based on certain "traits"?
The book You Are What You Choose by Scott De Marchi and James T. Hamilton introduces the TRAITS model and identifies 6 categories for an individual’s decision-making process: Time, Information, meToo, Altruism, Stickiness, and Risk
Certainly, we don't want REB members who will try to exert their own agendas, biases, etc., or who would otherwise be disruptive at meetings, or totally non-present wrapped in a cocoon of silence. In fact, REB members are assigned research ethics applications to review based on their disciplinary expertise first of all, and secondly, according to known personal interests or other areas of knowledge that they might possess. A theory of "Expert Systems" might also be applicable here in case REB members are ever replaced with IBM Watson type systems.
Anyway, I could probably write more like this for a while, but the relevance for eHealth is drifting away. Thanks very much Yervant for applying your insights to the work of REBs!
Tuesday, August 27, 2013
ehealth enabled Word Cloud with NVivo
I have tried experimenting with NVivo on some research data we collected from an online survey. Using the website for this blog I created a PDF and imported it into NVivo, ran a query, and created this Word Cloud for the site. This isn't for the entire site, but I think it is an intriguing picture of the weather patterns the data is sending forth.
I went back to the drawing board and make a Word Cloud for as much as the website I could get into Adobe Acrobat before it "ran out of memory" - about 1300 pages. The word count frequencies on the top 40 words was much much higher but the cloud still looks about the same as I will post it here. By the way, there are much better uses for NVivo, but this is the most fun so far:
I went back to the drawing board and make a Word Cloud for as much as the website I could get into Adobe Acrobat before it "ran out of memory" - about 1300 pages. The word count frequencies on the top 40 words was much much higher but the cloud still looks about the same as I will post it here. By the way, there are much better uses for NVivo, but this is the most fun so far:
Wednesday, July 3, 2013
Tuesday, April 16, 2013
Brain research projects - no more digital computers or programming!?
There are several huge "artificial brain" research projects going on now. There is one in Israel, United States (biggest NIH research grant in history), and the one in Europe is called the Blue Brain Project. One of the leading directors of the BBP is Henry Markham. I was listening to an interview with him in which he stated that within 10 years, once the virtual brain is created, it will mean computers will no longer need to be programmed - it would mean the end of the line for digital computers! These computers would not need to be programmed because they will have ability to learn by themselves. This really astonishes me. He further stated that the desktop computers in the future will be both digital and artificial brain.
The eHealth implications for the BBP are astronomical. At first the goal of such a virtual brain would be simulations to test drug reactions for Parkinsons or Alzheimers. Of course, those are more translational bioinformatic type of applications, but it would mean that every ordinary computer device would have access to a Dr. Watson type of medical intelligence.
In the spirit of this movement towards neuroscience integration of knowledge and huge research, I am reading Ray Kuzweil's new book "How to Create a Mind: The Secret of Human Thought Revealed". Parts of the book are beyond my ken, especially the chapters describing how the brain grid is constructed and how it works, but I like reading Kurzweil because his theories of the evolution of computers is compelling. Not everyone appreciates the Kuzweil vision, and I found very humorous a review of Kuzweil by Don Tapscott in the Globe and Mail where he quotes a detractor of his writings:
He also has many detractors. Douglas Hofstadter, the Pulitzer Prize-winning author of Gödel, Escher, Bach, once said that Kurzweil's books are “a very bizarre mixture of ideas that are solid and good with ideas that are crazy. It's as if you took a lot of very good food and some dog excrement and blended it all up so that you can't possibly figure out what's good or bad.”I have to return "How to Create a Mind" to the library now, but I almost finished. Can't say I completely understand the "hidden Markov models". I also don't fully agree with Hofstader. Kurzweil even has quotes from Albus Dumdeldore and one of the Weasley clan, and I don't think that detracts from the scholarly work. Many times throughout reading the book I get the feeling that the book was written for both a human and a computer audience. Future "Hals" from 2001 a Space Odyssey are a target audience, and I think this book is a great contribution for computer understanding of human intelligence and how the brain works. br />
Saturday, March 23, 2013
Interfaith Dialogue on Avatar Immortality
The Avatar project created by Russian Billionaire Dmitry Itskov has a remarkable website, including this Interfaith Dialogue on the spiritual future of humanity as it approaches the technological ability to:
- A robotic copy of a human body remotely controlled by BCI - 2015 - 2020
- An Avatar in which a human brain is transplanted at the end of one's life - 2020 - 2025
- An Avatar with an artificial brain in which a human personality is transplanted at the end of one's life - 2030 - 2035
- A hologram like avatar - 2040 - 2045
There is a lot of heavy weight endorsement for this project if you look at the list of names in their letter to UN Secretary-General Ban Ki-Moon . There are a lot more names from the religious traditions on that letter as well, than are included in this video of interfaith dialogue. One of the names I had to look up was Dr. James Martin — "British author and entrepreneur and the largest individual benefactor to the University of Oxford in its 900-year history". I probably should have heard of him, A) because I have worked with computer information technology for 30 years, and B) because I work in a university where large donations by benefactors is the essential component for driving research and keeping university infrastructure and education alive. I read the biography of Dr. William Osler several times, the masterful version written by Michael Bliss. When Osler was enticed to go to Johns Hopkins, one of the first hospitals combined with a teaching university level medical school, it was just an architectural blue print at the time. But it owed it's existence to visionary philanthropic benefactors and it was a turning point in philanthropic largesse. Millionaires were starting to seek immortality for their names by given money to universities instead of churches, except for eccentrics like Carnegie, who thought building free libraries and educating the massess was more worthy of the life energy contained in his horde of lucre. It now seems like giving money to immortality projects is the ultimate form of philanthropic immortality.
Friday, March 8, 2013
Cochrane Reviews for Patients Seeking Health Information?
I heard a story on CBC radio about "Plain Language" summaries available for patients (or healthcare consumers) who need to make decions on health information via Cochrane Reviews. I tried to google to find a textual piece on this story and there was "nada", which means the radio and the internet don't always interface or there is no automatic speech to text translation between the two media. A woman who I believe was also a volunteer with a Cochrane Review was describing how helpful it was for her to search the Plain Language summaries to find exactly the information she was seeking on the new research for her own health condition.
Anyway, it has been a year or two since I have visited the Cochrane Library website and I think there have been some improvements in the website and it's usability. Still, I am not sure how it can become one of the more trusted sources of health information on the net for the general public (like Mayo Clinic, WebMD, Medline) but I fully endorse it as a gold mine of health information. They now have a blog called Evidently Cochrane, and they are starting to use social media a lot more.
In fact, based on one of their reviews for acupuncture for shoulder pain, I have decided to cancel an appointment and rethink future treatment options.
Anyway, it has been a year or two since I have visited the Cochrane Library website and I think there have been some improvements in the website and it's usability. Still, I am not sure how it can become one of the more trusted sources of health information on the net for the general public (like Mayo Clinic, WebMD, Medline) but I fully endorse it as a gold mine of health information. They now have a blog called Evidently Cochrane, and they are starting to use social media a lot more.
In fact, based on one of their reviews for acupuncture for shoulder pain, I have decided to cancel an appointment and rethink future treatment options.
Cochrane Reviews
How do you know if one treatment will work better than another, or if it will do more harm than good?"
Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognised as the highest standard in evidence-based health care. They investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting. They are published online in The Cochrane Library.Each systematic review addresses a clearly formulated question; for example: Can antibiotics help in alleviating the symptoms of a sore throat? All the existing primary research on a topic that meets certain criteria is searched for and collated, and then assessed using stringent guidelines, to establish whether or not there is conclusive evidence about a specific treatment. The reviews are updated regularly, ensuring that treatment decisions can be based on the most up-to-date and reliable evidence.“We care that you care enough to help us provide people all over the world, with a personal or professional interest in health care, with reliable information.”
- Sonja Henderson, Managing Editor of the Cochrane Pregnancy and Childbirth Group, Liverpool, UK
Cochrane Reviews are designed to facilitate the choices that practitioners, consumers, policy-makers and others face in health care.No other organisation matches the quality, volume, scope and range of healthcare topics addressed by Cochrane Reviews.
As well as covering hundreds of medical conditions and diverse healthcare topics such as injury prevention and natural treatments, Cochrane Reviews have an international appeal through their global coverage of healthcare issues affecting people in all countries and contexts, including resource-poor settings, where it is vital to ensure that funds are used to maximum benefit.Without Cochrane Reviews, people making decisions are unlikely to be able to access and make full use of existing healthcare research.
“To ensure that the work of The Cochrane Collaboration is relevant to low and middle-income countries it is essential that people from those countries actively participate.”
- Jimmy Volmink, Director of the South African Cochrane Centre and Coordinator of the Cochrane Developing Countries Network, Tygerberg, South Africa
Why are Cochrane Reviews different?Cochrane Reviews enable the practice of evidence-based health care.
Health care decisions can be made based on the best available research, which is systematically assessed and summarised in a Cochrane Review.Narrative reviews of healthcare research have existed for many decades, but are often not systematic. They may have been written by a recognised expert, but no one individual has the time to try to identify and bring together all relevant studies. Of more concern, an individual or company might actively seek to discuss and combine only the research which supports their opinions, prejudices or commercial interests. In contrast, a Cochrane Review circumvents this by using a predefined, rigorous and explicit methodology.Users of the medical literature should start paying more attention to the Cochrane Database of Systematic Reviews [the database of Cochrane Reviews in The Cochrane Library], and less attention to some better known competitors."
Richard Horton, Editor of The Lancet, July 2010A Cochrane Review is a scientific investigation in itself, with a pre-planned methods section and an assembly of original studies (predominantly randomised controlled trials and clinical controlled trials, but also sometimes, non-randomised observational studies) as their ‘subjects’. The results of these multiple primary investigations are synthesized by using strategies that limit bias and random error. These strategies include a comprehensive search of all potentially relevant studies and the use of explicit, reproducible criteria in the selection of studies for review. Primary research designs and study characteristics are appraised, data synthesized, and results interpreted.Each review is prepared by an 'author team' with support from specialist librarians, methodologists, copy and content editors, and peer reviewers, taking hundreds of hours of work from start to finish.
“The Cochrane Collaboration has consistently involved consumers in its editorial processes, in the firm belief that the more consumers are involved, the more health services and research will grow in democracy, and will be tailored to people’s needs.”
- Silvana Simi, Consumer Coordinator for the Cochrane Multiple Sclerosis Group, Pisa, Italy
Updated on: March 19, 2012, 13:36
Copyright © The Cochrane Collaboration
Comments for improvement or correction are welcome.
Email: web@cochrane.org
Comments for improvement or correction are welcome.
Email: web@cochrane.org
Friday, February 15, 2013
The Case of the Missing Data
This news story resonates on several different levels, not so much on the scientific merit of the research ( I recommend reading a book called Good Calories, Bad Calories by Gary Taub), but on the technology that is involved and the policies for research data. First, the 9-track magnetic computer tape found in a box in a garage - it was really difficult to find a machine to actually play it it is so out of date. Next around - it is an example of why the current "Open Access" policy, is so relevant. I still have a shoe box of 3 1/2 inch diskettes I keep wondering what to do with.
The case of the missing data
By Kelly Crowe, CBC News
Posted: Feb 11, 2013 4:36 PM ET
Last Updated: Feb 11, 2013 4:35 PM ET
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External Links
- Use of dietary linoleic acid for secondary prevention of coronary heart disease and death, BMJ
- Photo of missing data reel
- JAMA warning on failure to publish clinical trials
- Medical journal amnesty
- Kamran Abbasi's editorial on compulsory registration of trials
- GSK trial registry announcement
- Study raises dietary fats and heart disease guidance, BMJ
(Note:CBC does not endorse and is not responsible for the content of external links.)
Scientists don't always report everything they discover. Sometimes loose bits of data can be packed up in a box with a bunch of old books and research papers and left in a garage in Sydney, Australia. And that means intriguing, puzzling findings that didn't make sense back in the day, can slowly retreat into scientific oblivion, about to be lost to humankind for all eternity.
Except that, in this case, the phone rang and a determined scientist from Bethesda, Md. having managed to track down one of the last surviving members of a research team, asked Boonseng Leelarthaepin if he knew what happened to the dataset from the Sydney Diet Heart Study that wrapped up in 1973. Luckily Leelarthaepin is a packrat and he knew where to look.
It's now clear that there are multiple polyunsaturated fatty acids, and that each of them may have different biochemical and clinical effects, said Dr. Christopher Ramsden.
"I knew in my mind where it was" he told me. He went into his garage in Sydney and started moving piles of boxes. "It did take quite some time. I opened up all the boxes. There were a lot of old books and different things, like hard copies of published papers," he said. Buried deep in the pile, he found what Dr. Christopher Ramsden, back in Bethesda, was anxious to see. An obsolete 9-track magnetic computer tape from the original Sydney Diet Heart Study. It was an unremarkable looking brown spool with a faded 3M label that had the words "LEE 3" printed in blue ink.
"The recovery actually took a substantial amount of time because it was in a format that wasn't readable by today's standards," Dr. Ramsden told me. He's a researcher with the U.S. National Institutes of Health, and he knew there was some potentially important information on that magnetic tape.
Dr. Ramsden tracked down some old equipment, recruited some experts, and after much technical handwringing, and format configuring, the data, that had originally been stored on punch cards, was translated into modern computer language so that it could be reanalyzed and interpreted. And what Dr. Ramsden found in that data made headlines this week.
It was a second look at an old clinical trial, first published in the 1970s, that had set out to measure the dietary effects of saturated versus unsaturated fat. It was assumed that if blood cholesterol could be lowered by reducing saturated fat in the diet, lives would be saved. But in this study, the subjects who switched to unsaturated fat had a higher risk of death.
"That was really unexpected," Leelarthaepin told me on the phone from Sydney. Because unsaturated fat can lower cholesterol, "in theory, survival would be better," he said. "But it was the other way around."
Back then, Leelarthaepin was a research assistant on the study and, at the same time, he was collecting data for his own PhD on a different aspect of the research. I asked him what they were saying to each other in the lab when they were faced with a puzzling increase in mortality. "We had no idea" he said. "We thought there must be some other factor influencing that." They adjusted the data, factoring in other risk factors like smoking, and still the observation held up. There seemed to be an increased risk of death from simply eating more vegetable oil.
"You control for age and all the other things, and that still did not explain it," Leelarthaepin said.
Almost half a century passed, and the Sydney Diet Heart Study languished in the medical literature, occasionally surfacing with a passing mention as a confounding example of the mysteries of dietary fat.
"Back in those days, all polyunsaturates were sort of considered the same," Dr. Ramsden said. "Mainly because they lowered blood cholesterol." Today, scientists know that polyunsaturated fat is much more complex. "In the last few decades there's been an increased recognition, and advancement in the science of this field," Dr. Ramsden said. "And it's now clear that there are multiple polyunsaturated fatty acids, and that each of them may have different biochemical and clinical effects."
Those polyunsaturated fats include omega-6 fatty acids and and omega-3 fatty acids. Most vegetable oils contain a combination of the two, but some oils are almost exclusively composed of omega-6s. Both are considered healthier than saturated fats, from animal sources.
So why did the Sydney Diet Heart Study report an increase risk of death in a group that ate a supposedly healthier oil? As an investigator in the emerging science of nutritional biochemistry, Dr. Christopher Ramsden wanted to know more. His first question: what kind of vegetable oil were the men in the study asked to eat?
"So, in that context, knowing there was an increased risk of death in the past, I really wanted to find out, number one, which oils were used."
Safflower oil affords rare glimpse
What he found out provided a unique research opportunity, because the original trial used safflower oil, which contains only omega-6 fatty acids, instead of a combination of omega-3s and 6s. An oil with a significant amount of omega-3s would complicate things, because omega-3s have been shown to have positive effects on the body, while omega-6s might cause inflammation and have other negative effects on the arteries. So by choosing safflower oil, with its concentrated levels of omega-6s, the Sydney Diet Heart Trial became one of the only clinical trials to investigate what happens if saturated fats are replaced with omega-6 polyunsaturated fatty acids.
"This trial, by the nature of the oil it provided, only increased omega-6 fats, specifically linoleic acid," Dr. Ramsden said. "And therefore it's really a rare opportunity."
In 1966, when they designed the trial, the Sydney researchers had no idea they were testing a future omega-6 hypothesis. They were just trying to find out what happened when middle aged men who'd already had cardiac events tried to replace saturated fat with unsaturated fat in their diet. What happened is that they did lower their blood cholesterol. Why then did they have increased mortality? The Sydney authors had no answer.
"Because we couldn’t explain it," Leelarthaepin said, they reported the findings, and waited to "see if another study showed the same thing."
Forty years later, as Dr. Ramsden searched all of the scientific literature for research on polyunsaturates, the Sydney Diet Heart Study emerged as one of only three that were relevant to his meta-analysis. But there was a problem. While the other studies focused on death or illness from coronary and cardiovascular disease, for some reason, the Sydney authors didn't report the specific causes of death. Instead they the grouped the data into one large category: "all cause mortality."
Why didn't they analyze the mortality data in more detail? "The main reason is that we were running out of time, and had no funds," Leelarthaepin said. "We felt we had only one shot at it, and 'all cause mortality' was the one we chose." The other data was set aside. But now Dr.Ramsden wanted to see it.
"We recognized there was missing data from this trial that was stopping us from completing a thorough analysis," Dr. Ramsden said.
So that started the hunt through the boxes in Leelarthaepin’s garage, and ultimately led to the headlines this week: "Omega-6 Fats Linked to Increased Risk of Heart Disease." Because, when he updated the meta analysis, crunching the old Sydney numbers, Dr. Ramsden found there was "no evidence of cardiovascular benefit” when omega 6 was increased, "and a substantial signal for increased risk," he said.
There are limitations to the finding. Experts point out that the level of omega-6s in the Sydney Heart Diet Study was much higher than would be found in an average diet. But it was convincing enough for many to recommend taking a second look.
But there's another aspect to this study, one that has implications for the entire field of scientific research. And that is: what a difference missing data can make.
It prompted some finger wagging from the British Medical Journal, as an example of why all data from clinical trials should be made permanently accessible to the entire scientific community.
In a press release, BMJ editors said "We are … asking researchers to tell us about any other documented examples of missing data, to build a picture of the full extent of the problem which is undermining evidence based medicine worldwide."
It's a crisis of lost information. Even though people volunteer to be test subjects, and scientists complete years of research, a large amount of clinical trial data never sees the light of day.
"The current best estimate is that half of all the clinical trials that are conducted and completed are never published," the BMJ press release said. And even when trials are published, without a chance to see all of the raw data, other scientists are not able to do an independent analysis and come to their own conclusions about what it all means.
"Missing clinical trial data may have an important impact on our overall ability to review the evidence base," Dr. Ramsden said.
Distorted scientific record
Two decades ago, the Journal of the American Medical Association published this warning: "Failure to publish an adequate account of a well-designed clinical trial is a form of scientific misconduct, that can lead those caring for patients to make inappropriate treatment decisions."
But so far efforts to recover missing data have failed. Back in 1997, dozens of medical journals offered an "amnesty," an open call for information about unpublished trials, so they could be tracked down and added to the international scientific record.
What happened? "Five years of industry resistance, government impotence and public confusion followed," Kamran Abbasi, acting editor of the BMJ, wrote in 2004.
"The failure to open up clinical trial data to independent scrutiny 'distorts the scientific record,' Abbasi wrote. "By suppressing negative findings and exaggerating positive ones, by downplaying harms and talking up benefits, healthcare decisions, are based on incomplete data and ultimately harm the patients."
So now 'open access' is being pursued once again. The Canadian Institutes of Health Research, and other public research funding agencies have put policies in place requiring open access to the data generated from studies they sponsor. But others warn that those policies do not apply to industry sponsored studies, "and cannot prevent biased publication and reporting of results from industry sponsored research."
There have been a series of well publicized examples of industry sponsored trials that failed to disclose potentially dangerous effects of the drug. Today, many scientific journals have a policy of compulsory registration, refusing to publish the results of any clinical trials that were not registered at the start of the study, with end points clearly defined, so everyone knows what the trial was setting out to investigate, and whether it worked, rather than choosing to highlight a secondary finding that was not part of the original inquiry.
But decades of research has already been lost, in the attics and basements and garages of scientists all over the world. Efforts to try to track it down have not always had the happy ending that Christopher Ramdsen was able to report. "And you know, we really think that's a testament to Leelarthaepin for his willingness to help us recover the data, go through it with us and help us evaluate it in detail," he said.
So how important is this missing data? In this case, the BMJ press office reported the relevance this way:
"The researchers conclude that recovery of these missing data 'has filled a critical gap in the published literature archive' and that these findings 'could have important implications for worldwide dietary advice to substitute omega-6 linoleic acid (or polyunsaturated fatty acids in general) for saturated fatty acids.'"
All of that because someone found an abandoned spool of magnetic tape sitting in a box in a Sydney garage.
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