An interesting research paper was published last month, in a medical journal called Pain Research and Management. It’s still kind of ‘hot off the press’. Best of all, for other chronic pain patients reading this blog, this article’s available – at no cost – on-line (there’s a link at the end of this post):
Development and Implementation of a Registry of Patients Attending Multidisciplinary Pain Treatment Clinics: The Quebec Pain Registry”(1).
This is part of what ‘open access’ means; that an article in a medical or scientific journal is available to anyone who wants to read it. For free.
When the research involves patients, acting as research participants, it seems only fair that they should have access to any papers or articles that are published using their data.
My background is in biomedical ethics, or bioethics; I’ve only recently become a chronic pain and rare disease patient. It often happens that my current reality and my background overlap. This is one of those times!
In bioethics, the idea (or concept) of fairness is very important. So important, in fact, that it’s one of the four principles of bioethics:
- Respect for autonomy (taking into account a patient’s preferences and values)
- Beneficence (helping a patient; improving their health or well-being)
- Justice (treating patients fairly; also fair access to healthcare and medical services)
- Non-maleficence (not harming patients; with some exceptions such as surgery, which cause harm but with the aim of improving health)
This principle of fairness can apply here, in terms of whether research should be freely available or restricted in some way. One of my favourite quotes on this is from Dr. Michael Parker. He’s the Director of both the Wellcome Centre for Ethics and Humanities and the Ethox Centre at Oxford University, both in England.
He wrote a few years ago, about bioethics, that:
those who work in ethics ought to have a strong interest in supporting moves away from subscription-based publishing (particularly when the price of such subscriptions is well beyond the reach of most members of the public) towards more open approaches which have the potential both to inform and promote rich and diverse forms of public deliberation and to be enriched by them”(2).
Basically, he’s saying that research papers should be free. Available to each of us. But that’s easier said than done, because medical and scientific journals need to make money. Without funds they can’t function, and we’d end up with no medical journals at all. And I doubt that’s a good option. So some compromises have been made, so that scientific journals can make money and keep publishing research.
The Canadian Government has three main research funding bodies, or agencies; called ‘Institutes’. These agencies support research using taxpayer funds; your tax dollars, and mine. That is if you’re also a Canadian, like me, of course.
One of these agencies is the Canadian Institutes of Health Research (CIHR), which funds… (I’m you guessed it!) health research. If you’re in the US, our CIHR is similar to the National Institutes for Health (NIH). But at a much smaller level, because our national population is much smaller.
Back in 2008, the CIHR decided that any research they fund would have to be available – at no additional cost – to all Canadians.(3) This is fair, because we taxpayers paid for the research – although any single research studies may have multiple sources of funding.
What I find odd is that the CIHR didn’t single out patients – research participants – in their rationale for requiring open access publications. Patients and research participants seem to fall either into the category of ‘the public’(3), or between the cracks:
From a knowledge translation perspective, this policy will support our desire to expedite awareness of and facilitate the use of research findings by policy makers, health care administrators, clinicians, and the public, by greatly increasing ease of access to research”(3)
Any researchers who receive funding from the CIHR must now ensure that their research papers are “freely accessible through the Publisher’s website or an online repository within 12 months of publication”(3).
But this means that a one-year delay is still allowed; anyone who wants to read about the research in that first year might have to pay for access to an on-line article.
Yet many patients may not want to wait a year to read about a study on their condition or disease. I certainly don’t! The same is true for parents of children who’re ill. So this Canadian compromise should probably be revised to allow more timely access to this research.
In the meantime, if you see the phrase ‘open access’ on social media, you’ll know how important this is for patients like us! And you can add your support for open access publications; if someone posts, writes, or tweets that research information should be available – particularly to patients! – you’ll be able to add your own view.
The opposite of open access, by the way, is usually noted by the term ‘pay walled’; that means that you have to pay for the article on-line, before you can read it. You might also see different terms for this, for example; blocked, gated, restricted-access, subscription-only, or some more colourful terms.
Now I want to go back to the research paper I mentioned at the start of this post; the one that was just published about a patient registry for chronic pain.(1)
In healthcare, a patient registry is a list of information about a group of patients. Usually patients who have the same condition, or similar diseases. The information added to the registry, about each patient, is often called registry data or a dataset.
Analyzing this registry data allows researchers to track the clinical/medical care of that specific group of patients over the long term; and to try to find trends. It also lets them see how the patients were doing at different points in time.
If patients in one group opted for a specific treatment, analyzing this data could show researchers whether they were doing any better – or worse – than patients who’d chosen a different treatment. This type of information is important, because it can help doctors know which treatments are best for which types of patients.
In this study, the researchers set up a province-wide registry of patients with chronic pain (CP). It started in 2008, and for this study they looked at data until 2013. Each patient had been referred to one of the five specialist pain clinics, inside large hospitals, in this province. They called it the Quebec Pain Registry (QPR).
These are some of the points I found most interesting about the research results, which were included in this medical journal article(1):
- Data from 6,902 patients were included in this registry
- Over 90% of the patients in this registry “consented that their QPR data be used for research purposes”
- The study found that “compared to patients with serious chronic medical disorders, CP patients… are more severely impaired in multiple domains”
- There are “27 observational studies and satellite research projects which have been completed or are underway” using QPR data
- This patient registry “provides the opportunity of answering important research questions on various aspects of CP (or specific pain syndromes) and its management”
That last point is really important to me, because of my own chronic pain condition. There’s not much information or research available about Complex Regional Pain Syndrome (CRPS), because it’s considered to be a rare disease. The researchers even used CRPS as an example of why these types of chronic pain registries are important for research:
Datasets of patients who gave informed consent can be accessed for conducting observational studies. Assessment of feasibility of research projects or clinical trials is also possible (e.g., number of QPR female patients aged between 30 and 50 years with a diagnosis of complex regional pain syndrome)”(1).
Hopefully this patient registry will lead to research that will eventually help everyone who deals with chronic pain, no matter the condition or disease!
References
(1) M. Choinière, M.A. Ware, M.G. Pagé, A. Lacasse, H. Lanctôt, N. Beaudet, A. Boulanger, P. Bourgault, C. Cloutier, L. Coupal, Y. De Koninck, D. Dion, P. Dolbec, L. Germain, V. Martin, P. Sarret, Y. Shir, M.-C. Taillefer, B. Tousignant, A. Teépanier, and R. Truchon. Development and Implementation of a Registry of Patients Attending Multidisciplinary Pain Treatment Clinics: The Quebec Pain Registry. Pain Research and Management, V2017, Article ID 8123812. 09 Feb 2017. On-line: doi.org/10.1155/2017/81238. Accessed 10 Mar 2017. Web:
https://www.hindawi.com/journals/prm/2017/8123812/
(2) M. Parker. The ethics of open access publishing. BMC Medical Ethics. 22 Mar 2013. V14(1)1472-6939. On-line. doi.org/10.1186/1472-6939-14-16. Accessed 10 Mar 2017. Web:
https://bmcmedethics.biomedcentral.com/articles/10.1186/1472-6939-14-16
(3) Canadian Institutes of Health Research (CIHR). Tri-Agency Open Access Policy on Publications. On-line. Accessed 10 Mar 2017. Web:
http://www.cihr-irsc.gc.ca/e/32005.html