Archive for the ‘patient advocacy’ Category

How to start an Open Science revolution! An interview with patient advocate, Graham Steel.

November 7, 2016

Continuing our Open Science Stars interview series, today we’re happy to bring to you Graham Steel, a relentless campaigner for all things Open!

Hi Graham, and thanks for joining us here! Could you start off by letting us know a little bit about your background?

For 25 years, my background (as in day job) was dealing with insurance claims for various insurers, legal firms and service providers. In my spare time as of around 2001, I became involved in research/science outreach and as of now, I would class myself as an open science enthusiast. From Jan 2015 – August 2016, I acted as Community Manager (then Social Media Manager) for ContentMine.

When did you first hear about open access/data/science? What were your initial thoughts?

In order, I first heard about open access late 2006, open science the following year and then open data. My initial thoughts were that all these entities were much needed and refreshing alternatives to all that I had seen or read about such topics up until then, i.e., closed access, prohibitive paywalls, “data not shown” etc.

You’re what some people call a ‘Patient Advocate’ – what is that, and what’s the story there?

The terms Patient Advocate and Patient Advocacy broadly speaking can mean a number of things. By definition, “Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors, and carers”. For myself personally, this began in 2001 and mainly concerned bereaved relatives and then patients and their family members. See here for further details.

You relentlessly campaign for various aspects of open science – what drives you in this?

My means of background, I would say with certainty that during the period of around 2008 – 2011, the (sadly now deceased) social media aggregator site Friendfeed was the space in which the foundations for a lot of my current thinking were set out. Prior to that, having already been primed with open access and open data, that’s pretty much where open science really took off in earnest. Science and indeed research in the open is without question the way forward for all.

Science and indeed research in the open is without question the way forward for all.

You’re not exactly silent in your angst against some publishers for their business practices. What are the major issues that you have here?

With regards to the “angst” you mention, I have been become a more mature/level headed individual these days in this respect compared to a few years ago. Looking through my blog posts over the years, these have mainly been about ‘pro open’ issues rather than ‘bashing certain publishers’. As a prolific tweeter though, I may have put out ‘a few’ ones where I have not exactly been ‘silent’ as you say.

How does social media play a role in your daily activities as an open advocate?

What is this thing called social media that you mention? Having joined Twitter in January 2008, initially I didn’t use it that much but that has certainly changed over time. “@McDawg posts an average of 53.51 tweets per day” according to one of many free online tools. Social media is pretty much essential for what I and many many others do pretty much everyday.

How does open access play into the bigger picture of open knowledge and open culture?

Great question! Firstly, I thought about a comment (in part) I made in an interview back in 2012. “OA itself however is just one cog (but a significant one) in the wheel of Open Science!!” In my mind, I don’t think it’s easy to ‘timeline’ as you were the onset and development of all things open. I’ve not studied free/open culture in vast detail myself. A good source in this area (not surprisingly) is Lawrence Lessig. See here for details. The history of open access dates back to around the 1950s. When ArXiv.org started in 1991 that was the precursor to what we know as open access today. In short, I would say that open access is a foundation stone to the grander scheme of things.

I would say that open access is a foundation stone to the grander scheme of things

You’re a major player in communities such as OpenCon – what position do you think these play in the development of open initiatives across the planet?

I think it’s important to have a number of open communities/initiatives across the planet and that there should be synergy between them wherever possible. Specifically, OpenCon “was convened in response to incredible desire from the next generation to advance these issues.” [Open Access, Open Data, and Open Education]. Other than the annual OpenCon event which has taken place every year since 2014, the community hold regular calls online (open to anyone with an internet connection) as well as many satellite events around the planet before, during and after the main event each year. I am extremely encouraged by such activities.

You once said at SpotOn London that getting younger students and researchers to practice open science was the real revolution – what did you mean by this?

What I meant by that is reflected by the answer to it. In context, that was a short comment I made when live-streaming a Panel Discussion, “What do you need to start a revolution?” in 2012 in London. VIDEO. Transcript of what I said:- “A question for Ethan (Ethan Perlstein) from an Open Science Enthusiast to an Open Scientist. What can we do to further encourage upcoming younger researchers to be open scientists? That’s the revolution!”

Ethan replied, “For sure. I mean to me, the first step was simply getting on Twitter and realizing there’s a community of solidarity out there ‘cause otherwise, you’re just stewing in your own thoughts. So that’s my definition of the first step. And then from there, people are going to have more specific interests and you’ll find a sub group within the larger community that you can then complement the social network activity with real face to face activity and then you can start to do important things. The only thing I can say is that you need to first find that community of solidarity and Twitter is the easiest way to find them.” 

How can younger students commit to open research practices without the fear of career or scooping risk hanging over them?

In reverse order, the issue of scooping. My advice would be to get your work/data/code out there on the internet as quickly as possible. This could be via an Open Notebook, on GitHub, or somewhere within the many platforms of Wikipedia etc. In terms of research papers, there are now many options to choose from in terms of uploading a preprint of your work. With regards to the fear of career risk, be bold! Take a ‘wear open on your sleeve’ attitude. I can highly recommend watching Erin McKeirnan’s talk My pledge to be Open from OpenCon 2015.

Also check out her project Why Open Research?. Also from that event, I would suggest watching Michael Eisen’s talk, Wear Open on Your Sleeve.

How have policies in the UK with regards to open science changed over the last few years? What do you think the most influential factors here have been? Do you think they are generally progressive policies?

This is a complex issue with so many players involved. When I first started to follow the UK’s position with regards to open access many years ago, most of the key research funders had a reasonably strong position on ‘encouraging’ open access. (The exception being Wellcome Trust who started mandating open access in 2005). That wasn’t largely effective (as elsewhere) which in part led to The Finch Group/Report around 2012. The outcome of Finch was a preference for Gold open access.

finch

Since then, there have been influential factors by funders such as Wellcome Trust, the world’s largest medical research charity funding research into human and animal health. Wellcome’s progressive policies/position on open access can be found on various pages on their website such as here, here, and here. This year, they announced their own unique open access publishing venture, Wellcome Open Research which will start publishing research as early as next month.

I am also mindful of some salient responses from Jan Velterop when I interviewed him in 2012. “What always surprises me in these discussions is their national focus, whereas science is one of the most global enterprises on earth. The most positive developments for OA have been the greater awareness of it, even in the general media. Little else is new. And even attention to open access by the Guardian isn’t, as this article from February 2005 shows”.

What do you think the biggest impediments to open research are? How can we collectively combat or overcome them

impact-factor-opium

First and foremost has to be Journal Impact Factor (JIF). This is despite an abundance of evidence which over the years has shown that this is a highly flawed metric. I would encourage academics to make enquiries within their Institutions to take a pledge and sign the San Francisco Declaration on Research Assessment, DORA. Secondly, as mentioned earlier, embrace the fact that it takes very little effort these days to get a preprint of your work archived on the web.

I would encourage academics to make enquiries within their Institutions to take a pledge and sign the San Francisco Declaration on Research Assessment, DORA

What tools or platforms would you recommend to researchers looking to get into open science?

There are so many these days, where does one start? The best resource out there at present (I am not alone in this view) is Innovations in Scholarly Communication (now available in seven languages) created by Bianca Kramer and Jeroen Bosman. Also see https://innoscholcomm.silk.co/ which is super awesome.

Where do you see the future of scholarly communication? What steps are needed to get there? Whose responsibility do you think it is to lead this change?

I don’t have the answers to those myself. As of the time of writing, I would highly recommend Open Science Framework. I am moving more and more in the direction of advocating preprints for any paper with optionally, publication in journals later.

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SOURCE

Thanks for the great interview, Graham!

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Making Sense of Research Papers

October 21, 2016

This post was prompted by the following tweet on 20th October 2016:-

 blcomp-pic1CC-BY

BACKGROUND

This got me thinking again about this issue. I don’t think this issue relates solely to open access papers, but to any science/research papers. As such, let’s leave the open access issue aside (where possible) for the purposes of this post.

From a personal point of view, as a non academic, I started reading research papers back in 2001 during my time in the Charitable Sector. For the organization in question, we had three fully qualified Scientific Advisors (at any given time) who were always to hand to assist us Trustees and Members when it came to technical issues where we were out of our depth.

3scientiststaralongtravistaylor-anthonycarboni-m-0527-653x0_q80_crop-smartIMAGE SOURCE

Given the fact that we were producing monthly newsletters which always included information on the latest research in the field in question, their input was invaluable.

As matters progresses, I started to consume more and more information, especially after one of our Advisors made me aware of PubMed ! Several months in, I was requesting dozens of PDFs per month either for personal use or to pass on internally to my colleagues. At times, rather than pestering our Advisors on every occasion, if I couldn’t understand a paper, emailing the author (or calling them) usually did the trick.

I then built up a large database of researchers in various fields (in this case, namely Neuroscience and Glycobiology) and over time, I/we had an extensive field of expertise at our virtual fingertips.  This was all in a time period before social media I should add !

Moving on several years.

spinning-clock

On the internet there is a lot of information. Good, bad and ugly. In terms of the topic of this post, there are LOADS of Patient Forums online. Personally, I am only antiquated to a handful. Cue an earlier post, The International Gang of Four (IGF).

I recall I phrase I used from someone else in a comment I left on a PLOS paper which read:-

Articles in Science Journals do demand some effort from the reader; it’s not like reading the newspaper!

When I thought about that comment again, it sort of made me think of a partially related topic.

Patients would be confused if they were to have free access to the peer-reviewed medical literature on the web

Without being pejorative or elitist, I think that is an issue that we should think about very, very carefully, because there are very few members of the public, and very few people in this room, who would want to read some of this scientific information, and in fact draw wrong conclusions from it […] Speak to people in the medical profession, and they will say the last thing they want are people who may have illnesses reading this information, marching into surgeries and asking things. We need to be careful with this very, very high-level information.

Oral evidence to inquiry, March 1st 2004, John Jarvis (Managing Director, Wiley Europe)

Response

This position is extremely elitist. It also defies logic. There is already a vast amount of material on medical topics available on the Internet, much of which is junk. Can it really be beneficial for society as a whole that patients should have access to all the dubious medical information on the web, but should be denied access to the scientifically sound, peer-reviewed research articles?

In some cases, to be sure, comprehending a medical research study can be a demanding task, requiring additional background reading. But patients suffering from diseases are understandably motivated to put in the effort to learn more about their conditions, as the success of patient advocacy groups in the USA has shown. Patients absolutely should have the right to see the results of the medical research that their taxes have paid for.

SOURCE

In 2011 after giving an invited talk at the conclusion of a JISC funded project entitled Patients Participate!, I found out about the excellent Sense About Science.


I then put out the following tweets this morning:-

Responses thus far…

Going back to the opening tweet:-

Lay summaries, supplements, primers: Scientists (and journals) strive to make science accessible to public (and each other)

lay-summaries

Petition calls for lay summaries in ecology journals

Simplified synopses of research papers could help to bridge the gap between scientists and the public.

PLOS Medicine This Journal provides an Author Summary for all if not most papers.

Some other resources I found last night after a quick search:-

STM Digest will feature lay summaries of science papers with societal impact

Opinion: Lay summaries needed to enhance science communication

That last link takes you to the Access to Understanding homepage.

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Access to Understanding is a collaboration uniting organisations that want to improve public understanding of the latest biomedical and health research findings.

Our mission is to bridge the gap between public access to biomedical research articles online, and the wider understanding of the findings described in those articles.

Although online, open access to current research is increasing, much of this information is only accessible to a niche audience, usually just other scientists, due to the use of highly technical language. Access to Understanding aims to make scientific knowledge truly accessible by championing clear, concise and balanced summaries of research findings making them understandable to non-specialists. We are doing this by:

  • Providing guidance for anyone who is planning to write about biomedical research for a non-specialist audience.
  • Promoting online resources that support the use of plain-English writing in biomedical and health research.
  • Encouraging early-career scientists to write about research in an accessible way through our Access to Understanding science writing competition and giving anyone the opportunity to vote in our People’s Choice Award.
  • Working with like-minded organisations and individuals who want to help us bridge the gap between access and understanding – find out more here.

If you would like to help us achieve these goals, please contact us and tell us how you can help.

Access to Understanding ran an annual Competition from 2013 – 2015.

Here you can find the winners and commended entries from each year of the Access to Understanding science writing competition.

It was an honour to have been asked to act as one of the judges over 2013 – 2014 competition. Here is a video summary this of at the British Library (BL) which I think summarizes all of the above in context.

Why Open Access ? Here’s my personal story

March 2, 2015
 (Re-posted from my now deceased blog, 13th October 2008) 

 

I did re-post this to my WP blog a couple of years ago but it was worthy of an update.

I decided to rewrite this post after receiving this tweet from Dr Martin Eve:-

I would very much encourage everybody to read his compelling post Open access in a time of illness

 

Why does Open Access matter to me?

I became involved in patient advocacy in September 2001 just under two years after I lost my brother Richard (who was aged 33 at that time) to a fatal, rare neurodegenerative disease (vCJD). At that time period, the prognosis of the disease was grim to say the least and with no treatment on or under the table, 9 months after the official diagnosis of his condition, it had gone downwards so much, we as a family were allowed under Scottish Law (with approval from his GP) to let him go.

The situation was so rapid, it didn’t occur to any of us to declare anything but defeat.

Richard & Graham

Graham & Richard Steel 1999

That was the history to the start of this post but not the point of writing it.

Two years later…

We (family) were approached to become more involved in a related support group. Dad declined, I agreed and took up the post of Vice-Chairman, a fairly daunting task at the age of 33.

During the early years of this work, I commenced the process of studying peer reviewed scientific, technical and medical (STM) research in detail for the first time.

One of the first questions I was asked  by the organizations Secretary was “Should we send scientific papers to family members, they’re quite complicated?” Me, “Well, I think we should give them the chance to look at relevant papers. Some might actually be interested in reading them, we should at least give them that opportunity rather than deny them”.

As Dr Eve touches upon in his post:-

Namely, that there isn’t a public for this material because it is specialized in both its wording and its content.

This is total nonsense and I really can’t stand it.

I completely agree.

This namely involved paper copies of Toll Access (TA) articles passed to the support group (which then became of Charitable status) I was involved with, by highly regarded UK researchers in the field in question. Whilst ‘we’ were able to share such research (with family members of the organization) by post using “fair use”, I knew that copyright restricted me from sharing any such material with a wider audience – the organizations website which I agreed to take over the handling of.

Despite this restriction, simply by placing as much information online in an open manner wherever possible, in the space of year, traffic had increased by over 4000%. As such, even before I knew what Open Access (OA) was, it was abundantly clear that being open was the main key to outreaching.

During this period, one of our three Scientific Advisors (Prof. Sarah Tabrizi) made me aware of PubMed.

After leaving that organization in 2005, I wanted to continue my patient advocacy work with broadened wings and become involved in other issues.

When did I become aware of OA?

Mid 2006. Up until the day in question, I had a pretty simple template email system in place to request PDFs of TA manuscripts directly from authors.

On the day in question, I noted from the Abstract of the Manuscript that I was looking for, there was a link to the full article. I had never seen a full paper online before. I had been of the view that all such content was locked behind an online paywall.

paywall

PLoS Pathogens
was the first OA Journal that I came across.

Not only could I access the Manuscript I was looking for and had requested, but the real eye opener was that I was able to access the entire Journal online for free! And not just that Journal, but I had stumbled upon something extremely significant.

open-access-logo

OA was a dream come true. Until then, I had sent out ~1000 requests directly to researchers for their paywalled PDFs. 90% of those requests were happily fulfilled. At say £30 a paper, that would have cost me £30,000.

I did on one occasion burn a substantial number of these to CD-r at say 1 pence a copy (only a handful of copies were made) and hand over to  CJD International Support Alliance (CJDISA) in my remit as their Information Resource Manager. I was subsequently advised by a Librarian that this was a breach of publisher copyright.

homesewing

As I said in this interview:-

One of my main eternal frustrations remains not being able to share my extensive library of papers due to Draconian copyright restrictions. Creative Commons is a dream come true….. Indeed, I’m wearing one of my PLOS t-shirts right now =) Prof Lawrence Lessig, you remain a STAR !!

Why should scientific and medical research be an open-access resource for the world?

To me, it makes so little sense* in this day and age to carry out and share STM research in a closed environment.

*Unless you are a traditional subscription based publisher of course.

May I quote in part, Associate Professor Bevin P. Engelward, the winner of the 1993 Nobel Prize for Physiology or Medicine from this 2007 PLoS Biology article:-

…In an age rife with the potential for infectious pandemics, bioterrorism, and toxic environmental calamity, and at a time when we need new ways to cure terrible illnesses, public access is our society’s compelling answer to accelerating the best science possible. This advance is much needed, both by researchers working in academic settings and in the private sector. Indeed, we should demand no less. We invite our fellow scientists to join in the demand for open access to biomedical literature.

Science, progress, societal benefits from that is a pretty concise focus.

Indeed, here’s a shot of Peter Murray-Rust and @McDawg discussing their forthcoming OA related Manuscript in London, August 2008.

(Image c/o Joe Dunckley’s sciblog Flickr stream)

What I do to support Open Access, and what can others do?

Simple. Spread the word.

My most blogged about post to date is precisely about this.

The blogosphere / and much more now, social media is an astonishingly great place to share and discover information. I’ve blogged fairly extensively about OA since I started blogging late 2007.

I’d like to close with this, again from Dr Eve.

What I’d like to close with here is that when worlds collide, interesting things happen. I remain dedicated to facilitating open access in the humanities disciplines, even when nobody needs this in a life-threatening circumstance, although I have argued that such circumstances do exist (in Open Access and the Humanities). But for me, the patronizing arguments that either everyone who needs it already has access or that there is no audience for OA can easily be countered by stories like this. We need open access. It makes the web a far better place, one where patients can turn to find high-quality material that can help them make sense of their conditions, one where others can turn to help them make sense of their worlds and cultures.

The musician in me cannot omit something poignant on this post. As such, here’s McDawg’s favourite mix of Peter Gabriel’s Shock The Monkey arising as a result of this competition. Such a mix was technically out of bounds for me at the time, but a friend in Portugal offered to assist on my behalf and did.

Peter Gabriel fully supports initiatives such as Creative Commons, The Open Society Institute, Students For Free Culture etc.