Helping patients learn more about medical conditions and potential treatments is a driving force behind efforts to broaden access to the research literature. While there remains a lengthy gap between basic research and clinical application of findings, research articles and books can serve as valuable tools to improve communication between physicians and patients. A good example can be found around the 31 minute mark in the video below, from Ken Burns’ documentary series, Cancer: The Emperor of All Maladies.

(For those wondering, I’m told the text being used is the TNM Staging Atlas with Oncoanatomy from Wolters Kluwer.)

While in the past we’ve discussed publisher efforts to provide access to developing countries through programs like Research4Life, it’s worth highlighting similar programs meant to bring the latest in research to patients and their families.

PatientINFORM is a collaboration between medical publishers, health organizations, medical societies, and health information professionals. Patients and their families can get access to research articles, as well as information prepared for the non-scientist reader.

PatientACCESS provides direct access to patients and caregivers through a simple process via RightsLink.

Both provide valuable services, but I suspect that as is the case for Research4Life, access alone is not enough. Discovery must also play an important role in getting this information into the hands of those who need it. While the availability of this material is a noble undertaking by medical publishers, helping patients find it remains a challenge.

David Crotty

David Crotty

David Crotty is a Senior Consultant at Clarke & Esposito, a boutique management consulting firm focused on strategic issues related to professional and academic publishing and information services. Previously, David was the Editorial Director, Journals Policy for Oxford University Press. He oversaw journal policy across OUP’s journals program, drove technological innovation, and served as an information officer. David acquired and managed a suite of research society-owned journals with OUP, and before that was the Executive Editor for Cold Spring Harbor Laboratory Press, where he created and edited new science books and journals, along with serving as a journal Editor-in-Chief. He has served on the Board of Directors for the STM Association, the Society for Scholarly Publishing and CHOR, Inc., as well as The AAP-PSP Executive Council. David received his PhD in Genetics from Columbia University and did developmental neuroscience research at Caltech before moving from the bench to publishing.


7 Thoughts on "Public Access: Getting Medical Information to Patients"

I welcome this post and would like to see more discussion on the topic. As a complex patient and advocate in the cause to put patients at the helm of their own disease management, I use patientACCESS constantly. Each time I mention it in an online patient community, I am met with confusion and disbelief. Like so much else in the cloudy world of patient access to information – whether their own medical data or the published research – routes to content are anything but clear, and the number of journals offering the service is small.

Most patient needs are still nicely met from very good sites like Mayo, ACS, or Hopkins. For those who want more, PatientINFORM is well intentioned but ineffective. For us, access has to be afforded at the journal level, not the article level. We are not actually looking for “the most important articles” on [a disease], but instead, e.g., for proof of concept on specific therapies for emerging targets that cross disease boundaries, or clinical trial reports that give us metrics to compare one pharma’s VEGF inhibitor to another’s, in terms of our own unique health profile. That sort of info is (a) critical to treatment decisions and (b) highly granular and time sensitive. To put it crudely, Wall St. knows more about clinical trials than the patients in them do.

There are some great patient resources, like Family Doctor publications, written specifically for patients and their families. For the most part these are still in printed form (and there is still demand in that form what’s more). However if these are digitised and tagged well they could be used as a gateway to further information. Imagine an ebook such as Understanding Diabetes, which can be browsed or read by patients. It would be possible to link to other more complex resources via Patient Inform and offer some useful context to that search. In other words, instead of expecting a patient to dig directly into research materials, or even summaries written to be friendly, an existing guide can be used to “sugar coat” the “pill” of indigestible research and also make it easier to swallow.

Duncan, good ideas for the average patient but the activist patient with hard to manage chronic conditions wants the articles. We often know more about the research than the treating clinician – we have the time to read and cull what applies to our bodies and our tumors while she doesn’t. Guides are one size fits all.

Broadening access to research findings is vital but ultimately the focus on individual papers is the wrong battle, and potentially a distraction. The main focus should be on the quality and reliability of medical research as John Ionnadis, Ben Goldacre and Iain Chalmers have persuasively argued over many years. Initiatives such as Cochrane Library – which is now thankfully moving to true Open Access – and AllTrials point the way forward. Of course the public should have free and full access to medical research – they have already paid for it and may have participated in studies. Unfortunately the publisher led initiatives you highlight here run the risk of being a distraction from the wider issue of quality, reliability and ultimately value.

I’m sorry, but why should efforts to improve access to medical research be a “distraction” from improving the quality of that research? Are we so limited as a species that we can’t do both?

As for the public having “paid for it”, you are perhaps mistaking the actual research with the publication of articles about that research. The public does not indeed have access to the actual research results which are usually locked up behind patent paywalls.

This is why focussing on providing public access to individual health research findings is ultimately a distraction from more important issues Far better to prioritise open access to resources like the Cochrane Library. It goes without saying that the public should have full access to research findings, and even anonymised clinical trial datasets should they want.

The distinction David makes between the results of research itself and the published findings in scholarly journals is very important. As both a publishing executive and the sister of a stage IV cancer patient who has participated in multiple clinical trials, I understand the needs of both publishers and patients first hand. Access to research articles can be extraordinarily helpful, particularly for patients with life-threatening or complex conditions and a sophisticated level of understanding like Marjorie’s, but the articles themselves are not entirely what patients need, nor are they entirely what public funds supported. The actual results of the research are. However, the challenge of translating research findings in a useful for way for patients and creating routes to discovery as David suggests requires a careful and creative strategy if patients at all levels of education and understanding are to be reached. For this, curation for specific audiences is needed.

Publisher initiatives like PatientINFORM and PatientAccess are providing a great public service by making published scholarly content available to patients in need of the information they contain, but to make that information truly valuable to patients, research findings need to be put in context for patient audiences at a variety of levels of sophistication. What is the appropriate role of publishers in this endeavor? Should contextualized provision of research findings to the general public be a requirement for public funding? Can authors help publishers create routes to discovery by suggesting groups, organizations, or social media outlets to which their article might be marketed for the public good? What David has identified is an opportunity. It will be interesting to see what creative ideas it provokes.

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