She works on biocontrol agents such as the Pseudomonas bacteria for control of  soil-borne pathogens, the Trichoderma fungus against fungal diseases of plants and Trichogramma (polyphagous wasps, which are endoparasitoids of insect eggs) against lepidopteran pests. For the last five years, she has been working as a biologist culturing these biocontrol agents and making them available to farmers through her office.

I came into contact with her through a mutual friend on Facebook. When I met her at the National Plant Protection Training Institute, Hyderabad I was surprised to find that that she is neither an entomologist nor a biologist by training, but an agricultural extension post-graduate from the University of Agricultural Sciences, Dharwad. I was curious about her work and when asked her how comfortable she is in handling the biocontrol agents. She replied that she had training in biocontrol and is now very confident in mass multiplication (production) of these agents.

When I asked about access to the latest research publications related to biocontrol agents, she told me that she searches for them on Google or sources them from the institutes where she gets training.  But because of limited access to the latest research outputs, she is not able to learn about new developments in biocontrol, and can’t train the farmers and others involved in biocontrol of pests and diseases with the latest information.

If people like Sunanda had better access to research outputs, they would be better positioned to share relevant information with farmers and others involved in biocontrol.

Satyabrata Maiti, Ph.D is a Plant Pathologist by education and Medicinal and Aromatic Plants specialist by profession. He currently holds the post of Director at the Directorate of Medicinal and Aromatic Plants Research (DMAPR) in India which is part of the Indian Council of Agricultural Research (ICAR), New Delhi. To promote research on Medicinal and Aromatic Plants in India and to disseminate the research worldwide, he established a scholarly society, the Medicinal and Aromatic Plants Association of India (MAPAI), and launched an Open Access Journal of Medicinal and Aromatic Plants (OAJMAP). It is the first of its kind in the ICAR. Now the journal has published the first issue of its third volume since launch and is indexed by various agencies like DOAJ, Bielefeld Academic Search Engine (BASE), CABI, Chemical Abstracts Service (CAS), Google Scholar, Open J-Gate, Scopus and Scirus.

We interviewed him by email about his work, the institute and the journal on the occasion of DMAPR’s foundation day.

Dr. Maiti, congratulations to you and your team on the occasion of your institute’s 21st foundation day. Please tell us about your institute – its progress and recent achievements.

Thank you very much for your wish. It is difficult for me to speak about our achievements, since I belong to a school where we were taught that one who tells himself big, is not big. One is really big if others tell so. With this background, I am always shy to talk about achievements of ours. Institute begins its journey on November 24, 1992 and it has initial teething problem. I joined the institute in 1999 and started our work with boundary wall. Today it has good modern laboratory facilities to do research on Phyto‐chemistry, Cytology, Bio‐technology, Soil Science, Plant Physiology, Plant Pathology, Agricultural Entomology, Horticulture, etc. It has about 40 acres field gene bank and Medicinal Plant Botanical Garden which internationally recognized. It has rich collections of Commiphora, Saraca, Chlorophytum and Aloe species. It has facilitated release of about 30 varieties; registered 9 unique novel germplasm; taken two process patents; first in creating photo library, digital herbarium web network, open access journal, etc.

How do you see your institute in 2050 and what do you think your successors should think and work about?

It is as a pioneering research institute in the quality raw drug supply sector which is the basic requirement for assuring the quality in finished product. My successors should not deviate from this important task and look for easy options.

We know that the society you have established to launch a journal on Medicinal and Aromatic Plants is doing well. Why did you think it was necessary to launch an online Open Access Journal? Please tell us about the journal.

Online journals are always easily accessible without any cost and this mode can reach to the mass on touch of a computer key board. We maintain the quality with high standard. Our rejection rate is very high. We are not going for mass publication.

How do you compare the early days of your research and today’s access to all the research?

It is sea change. In those days we used send reprint request to know the detail of any paper. It used to cost us a lot on mail (airmail), but today a click makes the reprint available which is very convenient.

We see lot of knowledge-sharing products from your institute, like Digital Herbarium. In what other ways you would like to take research to the public? Are you going to establish a knowledge repository of Medicinal and Aromatic Plants?

I had a lot of innovative ideas on the software developments that will help the public to take right decision. But it needs right data and also manpower which I feel not accessible to me at this stage. My idea of herbal garden networking web‐base software is very convenient and appreciated by the National Medicinal Plants Board (NMPB). They have requested me to do similar web‐base data availability on their forest resources.

What is your advice to other scholarly societies in ICAR regarding open access to their research work?

Knowledge should be considered as “more you give free more it multiplies”. All societies should make their journal as open access. It will also be environmental friendly.

We see that a few institutes in ICAR have established Institutional Repositories. But they are not being populated except Eprints@CMFRI, institutional repository of the Central Marine Fisheries Research Institute. What are your comments on opening up of access to publicly funded research outputs?

I find repository is in fact necessary at this stage, in web‐age. Earlier we used see that people were spending time in compilation of bibliography on a particular topic. But now you give the key word, you get the references that are available in web any where in the world. What we need now to put our material in the web which will be accessible to others. One caution, before placing it in web its genuineness must be confirmed. Otherwise, the same will pollute the web‐environment and provide the bad knowledge to the public who do not have strength to find out which is right and which is wrong.

The ICAR has made its two journals Open Access but has not yet formulated an Open Access policy for all its constituent establishments. What is the reason and what are your suggestions/views on an Open Access policy?

It is not prudent to say that ICAR has no policy. When I was working in a new committee headed by Prof. Pradhan, Ex‐VC to reexamine the ICAR support system to various professional bodies, we recommended special grant for those societies who wish to switch over to open access journal publication from the present hard copy publication. I feel that even in ICAR open access is not well understood and it requires awareness.

Could you tell us a bit about yourself and what you do?

At the moment I work as as a consultant in entrepreneurship and business development for various projects in the Netherlands and African countries like South Africa, Tanzania and Uganda. My second activity is to help IT startups from the Netherlands in setting up their business by providing strategic advice and acquiring financial resources.

How do research papers help you in your work?  Could other sources of information (e.g. Wikipedia) stand in?

Practical information I find by using Google or Wikipedia. Most professional information I get through RSS feeds, alerts, Twitter and LinkedIn. If I want to search for scientific information I often use databases from Elsevier and Business Source Premier. For this I can use login codes from friends working at the University.

Do you have the access you need?

If I want certain information I can find it. But it is not always efficient because it takes time to get certain (paid) information. You need creative workarounds, to download illegal copies or borrow passwords form others.  The second thing is that I miss a lot of information because certain relevant articles never reach me (and I am not aware of their existence). An agent that crawls all resources and picks the relevant information for me would be a multi-billion idea.

Could you do more if you had more access?

It would save me valuable time to get access more efficiently.

Are there things you wanted to do but couldn’t because of lack of access?

I’m able to get access to most information available, at least in the Netherlands, but it is not always efficient to get access to certain resources. So yes I can do the things I want but it could go faster.

How widespread is this issue in your experience?

I think in NL, with the right search skills and a network of people with  access to other resources, it is possible to get to all the information you want. If you miss these two, then it can be very hard.  Open access can certainly make a difference because it avoids the workarounds I mentioned and saves a lot of time. The issue of lack of access is an issue that I experience most during my visits at African educational facilities. The professors and students miss the skills to search (and are also not always willing to learn these skills) and they do not have access to certain resources. This can be online databases with subscriptions, but also lack of goo Internet connections are an issue.

What is M-CM?

M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome first identified by researchers in 1997.

Could you tell us a little about the M-CM Network and how it was formed?

When my daughter, Signe, who is now 2 and a half years old, was diagnosed with M-CM, there was already a strong patient support community online facilitated by a family in England. The Internet and social networking largely solved the problem of connecting patients to each other without the need for a formal organization or fundraising.  Because peer support was taken care of, our own organization was founded to accelerate research and make it easier to get clear, reliable information about M-CM.

What were you told about M-CM when you first found that Signe was affected?

Signe got a formal diagnosis of M-CM when she was about eight months old from a local geneticist.  He sent us on our way with only a few paragraphs of information and no follow-up appointment.  The next month, we made a trip to Michigan to see a geneticist that had a particular interest in M-CM and had seen many cases.  He gave us much more information, but there was still an awful lot of “we don’t know” and “every child is different”.  One of the things that we discussed at that appointment was screening for cancers that have an elevated risk in syndromes with similarities to M-CM.  The degree of risk for these cancers in M-CM was sort of unclear and it was largely left up to us if we pursued screening or not.  We asked how a clearer idea of the risk would ever be known and we were told that a longitudinal registry would be the answer.

What’s a longitudinal registry?

A registry is an organized system for collecting, storing, retrieving and analysing information on people with a specific condition. “Longitudinal” just means that data is collected over time rather than just once.

You’re not just supporting families and research you are also actually working to build up your own resources. Why does it fall to a patient advocacy group to do these things?

Well, nobody else was doing it.  When my daughter was born, she was very peculiar, and I was amazed that there was no entity keeping track of her as a child with birth defects, or then as a child without a diagnosis and later as a child with a particular rare diagnosis.  I just assumed that there were government bodies that kept track of all of those things.  I had no idea how much of this depended on the non-profit sector.

Right now, patient families collectively know more about M-CM than is scientifically documented. We find ourselves having to educate our children’s care providers, sometimes with anecdotal information that we have picked up on Facebook.  As I’m sure you can imagine, this doesn’t always go over very well.  Our organization wants to connect the knowledge that patients have with the medical and research community so that what we’ve learned can be verified and documented scientifically, and so that we can learn much more than can be gleaned from anecdote alone.

Our founding objective was to create a longitudinal registry.  We’ve been inspired by efforts by the Genetic Alliance and some specific rare disease organizations to create advocacy-owned data and sample repositories, so that these research assets can’t be siloed in any one institution.  This will make it easier for all interested researchers to study M-CM and it saves families from needing to submit the same data and samples to multiple studies.

We are exploring using Indivo X, an open source electronic health record, as a research platform.  One benefit will be that once participants add their data, it exists in a format that will continue to be useful to them as an electronic health record.  We can build custom apps that provide feedback to families based on how their data compares to that of other participating families.  For example, our families are often asking about head circumference and how their child compares to other affected children at the same age.  A custom app could clearly demonstrates that comparison for a parent.  On the researcher end, we think that the platform would give researchers extremely rapid access to motivated participants and their data.

The genetic marker for M-CM was discovered recently and we are now in a situation where there are researchers considering starting their own longitudinal registry. We believe that patients will be better served with an advocacy-owned registry, and we are looking to engage and benefit patients in that effort in ways that we can’t expect researchers do.

What kinds of use do members of your group have for research literature? What forms of research information do you find most useful?

Unfortunately, we can’t depend on all of our doctors to consult the published research  literature about M-CM.  I know that many of my daughter’s specialists haven’t and it’s clear from the questions of parents of newly diagnosed children that they are sometimes not getting advice from well informed practitioners.   It’s not practical for doctors to spend a lot of time learning about a syndrome that they may see only once in their careers, so they provide recommendations based on a typical patient rather than the syndrome.  Many parents, however, will make the time to learn everything they can — and this is why the inaccessibility of medical papers to patient families is so very frustrating.  Some of the people most motivated to do this research are unable to.

Most of the published literature about M-CM consists of case reports. A few papers look at larger cohorts of patients: often the data is pulled from previously published case reports in addition to a few patients seen at a particular institution.  There is one published paper at this time that is a longitudinal neuroimaging study.  This on its own is the most valuable piece of literature, but the rest of it has value as a whole — it’s just that it’s very time consuming to process all of it. And as I said, it’s inaccessible to many of the stakeholders most likely to devote time to it.

M-CM is a rare disease with a relatively small literature. Is access to this literature a problem for you? Or for the researchers you work with?

I haven’t encountered professional medical researchers for whom access was a problem. The ones that we communicate with work at institutions where they have broad subscription access.  In my opinion, parents of patients constitute another type of researcher and it is definitely a problem for them.

Has the NIH mandate had any effect on your work?

The longitudinal neuroimaging study that I mentioned before was published right before the NIH public access policy went into effect, so that paper will likely never be freely available.  Most future research published from the US will probably be NIH funded and subject to the access policy, including the new findings about the genetic marker for M-CM.  For this I am grateful.

I have had an interesting experience with a paper in the New England Journal of Medicine announcing the discovery of the genetic marker for Proteus syndrome.  This was exciting for our community because there is some symptom overlap with M-CM: both are overgrowth syndromes thought to be the result of a mosaic mutation. Kids with M-CM are sometimes misdiagnosed with Proteus syndrome.

This paper was the direct result of research at the NIH and I was glad to see that when the announcement was made, the paper was freely available online.  About a month later, I went looking for it and it was paywalled.  I couldn’t believe it, I was sure someone at the journal had made a mistake, so I had an email correspondence with them.  It turned out it was not a mistake, and they told me that it would be open again after nine months had passed.

We recently had a new family introduce themselves in our online patient community with a child with a Proteus syndrome diagnosis, but this child has a lot of M-CM characteristics.  Apparently they had been told that the Proteus diagnosis had been verified with a genetic test on a blood sample.  The trouble with that is that the NIH paper stated that the marker didn’t show up in blood, they had to test tissue to find it.  It seems like this family may not have been getting accurate information, but who would I be — some stranger on Facebook — to tell them that?  Fortunately, now the paper was open, so I could refer to the statement about testing directly in the paper, which the family could then share with their doctors.  Rare disease patients really need access to medical literature, because doctors aren’t perfect.

Patient advocacy and support groups are playing an increasing role in medical research as both sponsors and sources of trial participants and clinical data. What does the M-CM Network bring to the research process? What do you see as the role of rare disease foundations in the research process going forward?

We are a very young organization, only a little over a year old, so the most substantial thing that we have done so far is refer patient families to the study that has now identified the genetic marker.  We have started a patient contact registry and we’are in the process right now of conducting an anonymous natural history survey. We hope to have data from both of those things online in the next year.  Neither of these are research in the traditional sense, but they were simple things that we could do quickly that we knew would answer some basic questions for patient families.

Again, I am very new to this, but it seems like the current medical research paradigm of closed and proprietary data is extremely dysfunctional.  Rare disease advocacy organizations, by virtue of their small scale and very personal relationship with the issues at stake, have an opportunity to cut through a lot of nonsense fundamental to typical institutional research.  I tend to think that we can be powerful change agents, by demonstrating innovative, truly collaborative and efficient ways of accomplishing things at a small scale.

A lot of people think of advocacy organizations as strictly for patient support, fundraising and grantmaking.  But there is a clear trend in rare disease advocacy toward a more direct relationship to research.  The NIH has acknowledged the strength of this trend by launching a pilot program to fund and facilitate the creation of 12 registries to be owned by rare disease organizations.  Genetic Alliance has been a leader in this area as well, by creating a cooperatively owned biobank and registry product for advocacy organizations.  Sharon Terry, who heads Genetic Alliance as well as an organization for the genetic disease that her children have, authored an inspiring paper on this phenomenon in 2007, Advocacy Groups as Research Organizations: The PXE International Example.

So we are just at the beginning of this journey, but the choices we are making are influenced by others that have been pushing in this direction for many years.

I just want to add that those of us entering into this space from the outside and scratching our heads at the status quo, are really in debt to those of you working on change from the inside.  It is such a relief every time I encounter the rare person within the medical or research establishment that acknowledges the problems with data/research/science that is not open.  So, thank you all very very much.

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Christy Collins is the president of the M-CM Network.  She was interviewed for Who Needs Access? by Cameron Neylon.

Could you tell us a little about the Julia Group and what you do?

We mostly do statistical consulting, contracted research and customized programming. We were originally a satellite office of Spirit Lake Consulting, Inc., founded around 2000. We spun off as a separate company in 2008.

What is your background and how did you come into small business?

I have a Ph.D in Educational Psychology with specializations in Applied Statistics and Tests & Measurement (psychometrics). I also have an MBA. I was an industrial engineer before I went back to graduate school. I began working as a consultant in 1985 when I was a graduate student. I was an associate professor when my husband passed away and the consulting was paying enough more by then that when I had to choose between the two careers, I went into consulting full-time and left academia.

What kinds of publicly funded research do you use in your day-to-day business? How do you gain access to it?

If at all possible, I access results — and open data — through full text sources online. Because I’m an adjunct at one university and a consultant for a couple of others, the research may be available through the university libraries either online or I may pick up the journal article if I’m on campus. If I’m not teaching that semester or on campus for a meeting that makes no economic sense because the $25-$35 I’d save is far less than the money I would use in billable hours by driving over to campus and back.

You had a very strong reaction to the Research Works Act, particularly the fact that it claimed to “support small business”. How would the RWA have affected your business in practice?

Our business is a mix of different sized contracts. We have medium-sized contracts of $15,000-$25,000 a year, and some multi-year grants and larger contracts but about half of our work is small to medium contracts, often around $5,000. For these, we’re often called in by a small non-profit to write a grant application, do an evaluation, write a program, etc. Very often, these projects will have 30 or more journal articles cited in the references. These include articles on statistical techniques such as propensity score matching or clustering, reliability and validity data on measures the client is considering using or research results. Our bids include any costs we anticipate. So, if I need to pay $25 for each of these articles, the cost of a contract is going to increase by maybe $750. On a large bid, that may not make a difference, but increasing a bid from $5,000 to $5,750 may make the difference between the organization being able to afford it or not. That’s a 15% price increase.

Obviously, the less work we have, the fewer people we hire. I just found it the height of hypocrisy that the same people who were screaming about a 3% or so tax increase hurting small business were supporting legislation that would result in much higher percentage increases for us.

You and your company are both consumers of research but also contributors to it through taxation. As a business you will appreciate the needs of commercial publishers to make a profit, but would also like your taxes to be low. Where does the balance lie?

I think the line lies similar with not allowing “double-dipping” on federal funds. For example, I have a person I hired to collect data in the schools. He also is a substitute teacher. I wouldn’t expect him to be collecting pay from the school on the days he’s being paid as a participant observer on our project, even if he is in the same classroom working with the same students he might see on days when he’s teaching. He has already been paid for that. He may be providing a small additional service to the school, but that is irrelevant.

Similarly, the commercial charges for journals are far disproportionate to the share of the costs they bear. Federal funds have paid for data collection, analysis and the authorship of the piece. Reviewers have donated their time. Frankly, I wonder if the commercial model is about to become obsolete.

What do you think are reasonable charges for access to this information?

At most, articles ought to have a charge of 99 cents or so, like the app store. If you had a model like that, people would probably pay it, the journals could recoup a modest fee and taxpayers like me wouldn’t be charged twice for the same research.

I’ve had a variety of interesting and unexpected assignments. About half as a paid consultant, half as a volunteer member of several governance and advisory boards for research organizations. At the moment, for example, I’m working on projects related to stroke, and neurodegenerative diseases of aging, as well as health services. Quite a lot of what I do is small-p “political”, so I don’t have an affiliation with any university. That gives me freedom to be more objective — but comes at a cost.

How do research papers help you in your work?

Access to original research papers and scholarly reviews is important. For example, If I want to argue that telestroke services in Canada should be expanded, I need access to the latest papers on cost effectiveness of telestroke to make the case. If I’m reviewing the impact of a particular research funding program, I want to be able to check the assertions that particular publications were truly ground-breaking. If, as a board member, I have to approve research priorities, I need to know if, and where, Canadian research is at the cutting edge.

Could other sources of information, like Wikipedia, stand in?

For some of the work I do, some important information is found in annual reports, government discussion papers, company websites, or strategic plans of research organizations. Compared to the research literature, these “grey” sources are easy to access. Some news alerting services are also very useful. And, yes, I do use Wikipedia as a starting point for topics I know nothing about (i.e. frequently!). But more often than not, these sources don’t give me the same assurance of credibility as reading the original research publications.

Do you have the access you need?

Not to the original research literature. Only about one in five of the original research papers I need is available through open access journals, PubMed Central, or the author’s own or institutional repository. I expected things to improve dramatically with the implementation of the NIH and other funding agency policies on access, but it hasn’t. Of course, the most recent papers are still embargoed, and many of the older papers haven’t been entered. (I should say that when I contact an author asking for an electronic copy of a paper, I usually get a helpful response, but this takes time.)

Could you do more if you had more access?

Of course: I waste a lot of time on search engines trying to find copies of research papers or final manuscript versions hidden away on obscure websites. It can be very frustrating, especially if the abstract suggests that a paper has the answer I’m looking for.

Are there things you wanted to do but couldn’t because of lack of access?

I’m particularly stymied in my ability to evaluate, in the most informed way, funding applications and the achievements of funding programs. When I had access to the research literature I was keenly interested in trying to assess research impact. Now I would hesitate to take on that type of project.

How widespread is this issue in your experience?

Some of the other consultants I encounter use mainly secondary sources, perhaps because they can’t get the real information. But I am concerned that there are people in government or health authorities, or even curious and educated laypeople, who want to, or should, read crucial original research, and certainly critical reviews and syntheses, but can’t. It’s unbelievable that even some articles that address the issue of knowledge translation (how health research can be translated into improvements in practice and policy) are published where the target audience can’t openly access them.

Alistair explains what they do:

We work with partners in developing countries to build a bridge from research to policy and practice.  We do this by delivering open access information products and services such as Joto Afrika – an East African briefing series on Climate Change Adaptation which was developed jointly between ourselves and the Kenyan organisation ALIN (Arid Lands Information Network).

Researchers from across the world (including our own IDS) have repeatedly shown that the appropriate use of research saves lives, reduces poverty and improves the quality of life for people living in developing countries. Development policy and practice should always be based on evidence and understanding of what has worked in similar contexts. But for this to happen, research needs to be made as accessible as possible — both to the decision-makers themselves and to the people and organisations that seek to influence them.

When fighting began in Libya last year, the IDS’s Human Development Resource Centre helped guide decisions about what kind of UK medical supplies and personnel to send to Misrata — making sure these decisions were informed by appropriate information and analysis. And on World Aids Day, 1st December 2011, HDRC collated and presented research which helped persuade the UK Government to supply 13.5 million more female condoms to women in developing countries.

But what about research within developing countries themselves?

Research makes an invaluable contribution to tackling poverty. In South Africa basic foods like brown bread, maize meal, rice, vegetables and fruit have been zero-rated for tax for some time. But paraffin, which poor people use for cooking, lighting and heating, used to be subject to VAT. Research by the South Africa Women’s Budget Initiative showed that removing tax from paraffin would cause only a minor loss of government revenue (less than 1% of all VAT revenue) and that, because poor households use paraffin much more than rich ones, removing the duty on paraffin was an excellent way to specifically target help for the poor. A few years after the research was published the tax on paraffin was indeed lifted.

So what’s the situation for people in developing countries who need access to scholarly research?

It isn’t nearly as accessible as it could be. India’s 300 University-level institutions and 13,000 affiliated colleges all struggle to pay journal subscription fees.

Is open access the answer?  It’s part of the answer, but in its present form not a complete solution:

When southern researchers try to publish their work in Open Access journals they can be deterred by the high author fees. OA journals based on the “author-pays” or “institution-pays” business models can be prohibitively expensive for researchers and their host institutions.

Yet where credible, public-funded and genuinely Open Access outlets do exist, the results can be transformational. The story of Sumant Vyas, Senior Scientist at NRC Camel, Bikaner, is a typical one. As a newly qualified PhD graduate with a long list of unpublished essays, he struggled to be accepted for postdoctoral research fellowships because he couldn’t afford the author fees for credible OA journals. But when he started using OpenMed, an EU-funded Open Access portal, his fortunes changed. He was accepted for a postdoctoral fellowship at the prestigious French National Institute for Agricultural Research (INRA). The selection committee were able to read his articles through Google Scholar linked to OpenMed. Vyas believes that OpenMed “played an important role” in his appointment.

Alistair comments:

The demand for Open Access is increasingly coming from researchers and research users in developing countries themselves. But there is a common perception in many developing countries that OA discussions are mostly dominated by those in northern, developed countries. So one of our aims is to help to get southern voices heard in what should be a truly global debate about Open Access.

Most fossil discoveries require a tremendous amount of preparation work after a specimen is excavated.  Fossils are typically brought back to preparation labs with little of the fossil exposed.  We’ve been trained to remove the surrounding rock (called matrix) and to stabilize fossil bones that are often in very poor condition.

Preparation tools include dental picks, scalpels, brushes, and even microscopes for very precise detail work. We also frequently use air-powered tools that range small carbide-tipped scribes to large jackhammer-like tools. A single fossil block will often require both aggressive “demolition” of hard rock matrix and extremely careful and precise techniques to preserve the finest details of a specimen.

BJ has worked on some fantastic specimens, including several new species — dinosaurs from Utah’s Grand Staircase-Escalante National Monument.  Here is one of the most spectacular:

Gryposaurus monumentensis, mounted skeleton at the Natural History Museum of Utah. Lori Nicholls for scale. Photo by BJ Nicholls.

Meet Gryposaurus monumentensis — the actual fossil is on display and bones are removable from a steel armature for study. The skull is a reproduction since the real skull’s weight would require a massive structure to support. This skeleton is about as complete and well-preserved as the famous “Sue” tyrannosaur at the Field Museum in Chicago. But unlike Sue — which was commercially collected, purchased by the Field Museum for $8.2 million dollars, and professionally prepared at a special lab built just for the Sue project at Disney World — the Grand-Staircase Gryposaurus was collected from public lands at negligible cost and prepared by scores of volunteers who collectively provided many thousands of hours to bring this specimen to light.

I’m proud to have done my small part in this truly massive, and mostly volunteer, effort.

Experiences like that have left BJ with an abiding interest in learning more about paleontology.  So one reason he needs access to published research is just that he’s interested in it.  But it’s more than that: he applies his increased knowledge to be a more effective, creative, and productive volunteer:

Since the NHMU prep lab and workers are on display as part of the paleontology exhibits, I often engage the public.  I’m a much better ambassador for the museum and the science if I have the opportunity to educate myself via open-access publications.

But what about in the actual preparation work?

Hind limb of an ornithomimid dinosaur

I’ve been frustrated looking for information about ornithomimids [the "ostrich dinosaurs"] since I’ve been working on one for over a year now.  I was specifically looking for images of bones of the pelvis since I’m working on pelvic material in very hard matrix.  Being able to visualize the bones would help me navigate around the fossil bone with diamond saws and larger air tools more safely.  It’s always helpful to have a roadmap to the shapes of bones you’re uncovering. These bones are delicate, and will be easy to damage as I work around them with powerful tools.

The problem is that as BJ tries to dig out the papers he needs to guide his work — to ensure he doesn’t damage literally irreplacable fossils — he keeps running up against online paywalls. There’s not much he can learn from abstracts, and as an unpaid volunteer with no budget, he really can’t justify buying access to papers at $30 each.

I very much appreciate having open online access at PLoS ONE to many excellent papers.  While I don’t have mastery of the technical language in papers, that’s a challenge that I’ve mostly been able to overcome using web search and persistence.

So we need more access to research?

The ranks of people like me expand with access to information. Science benefits as it gains “civilian” allies who contribute time, creativity, political support, and even money to their fields of interest.  We really need more science literacy and appreciation across all demographics. Open access tears down barriers, perhaps more than any other education strategy.  Armed with an open Internet, more people than ever will be able to participate in scientific interests as amateurs, volunteers, or even just as a growing and more serious audience for the sciences.

We’ll leave you with another view of that magnificant Gryposaurus skeleton — made available by volunteers like BJ and Lori, working without adequate access to the research that they need.

I do not believe I would be alive today if it were not for the information that can only be accessed by the layman (patient) in online sources.

This is a powerful example of the importance of access to the scientific literature for patients and Eric explains how it all started:

I was first diagnosed in 1993. Immediately, I sought all of the books in our public library about cancer care. Unfortunately, there was very little about the care of testicular cancer so I went on the internet and found the Association of Cancer Online Resources (ACOR) and specifically, TC-Net. This was extremely helpful to assure me that my care was standard and had an 80+% cure rate.

Fast forward to 2006 when my primary care physician mentioned that we should probably check the tumor markers again. The results were a marker of 24,000 (normal is less than 10). I immediately reconnected with TC-Net and was told to connect Dr. Lawrence Einhorn at Indiana University. He responded within an hour and told me what I already knew, that I had advanced disease and should start chemotherapy as soon as possible, followed by surgery (Retroperitoneal lymph node dissection or RPLND).

The expert surgeon he recommended, Dr. Foster, was based outside my area so my HMO (Health Maintenance Organisation) wanted me to use a local surgeon, Dr. Jarrad. I went to PubMed and did a citation search for journal articles by each doctor and found 104 by Dr. Foster (all related to RPLND) and 4 by Dr. Jarrard (all related to prostate cancer surgery). I used this information to convince the HMO that it was wiser to have me approved for treatment by Dr. Foster. I had approval in one hour after submitting the request and my local oncologist was amazed — both that I asked and that it was approved. Evidently this is not the usual outcome. If I had not had access to on-line medical journal information, I doubt if I would have received approval.

This is an excellent example of open access empowering patients to make choices about their healthcare. But while in this case citation data and abstracts were sufficient, in many cases full text access is vital for patients to understand their conditions. Unfortunately for Eric, the disease continued to spread despite more surgery:

The tumors now moved to the lungs. I was told by Dr. Einhorn that I would never be cured but that they could try to extend my life by “salvage” chemo or do a clinical trial of Avastin. Back to the net – my research suggested that salvage chemo should be tried first.

The treatment was successful although with many side effects: deep vein thrombosis, loss of nails on hands and feet, chemical induced loss of skin, severe peripheral neuropathy. Back to the medical journals to learn more about treatment options.

But do medical professionals listen to their scientifically informed patients?

My oncologist now considers every treatment suggestion that I give him because he knows that I have done significant, specific research on my condition.

So how important is a knowledge of the literature with the patient community?

I have had opportunity in the last few years to advise at least three other cancer patients (non-Hodgkin’s lymphoma, advanced stage testicular cancer, and brain cancer), all because they know I can find relevant information to help guide their treatment.

Eric has a final plea for all those stakeholders who have the power to increase access, which includes publishers, funding bodies and researchers:

It’s frustrating to find only a limited abstract even when searching through PubMed, a part of the NIH. I’m lucky to work for a big company and have access to the full articles through our library, but not everyone has this luxury. Complete and open access to medical journals would be a real lifesaver for those looking for a little edge over cancer. Please help us out, won’t you?