Plain-language research for patients: patientinform.org

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While I was guest-posting over at Collective Imagination last month, I suggested that while better public access to peer reviewed research articles is a priority for the scientific community, knocking down firewalls may not be sufficient to help many patients, who lack the scientific background to plow through a Nature article. To get there, we may need efforts to provide plain language, accessible, searchable summaries of the research that clearly signpost the articles' relevance to patient needs. In addition to many interesting comments on the post, I got an email from the people behind patientinform.org, whose website includes some nice explanations of medical research for the layperson and providing a list of reliable online sources. It turns out they also have a collaboration going with some of the larger patient advocacy organizations to supply clear, jargon-free summaries of recent research:

Patients or their family members can go directly to the Web sites of the American Cancer Society, American Diabetes Association or American Heart Association to learn more about important advances on specific diseases and treatments.

The participating voluntary health organizations provide consumers with links to the full text of selected journal articles as soon as they are published, as well as materials created by these groups to help the patient or family member more fully understand the implications of the research. (Each organization will choose how much and what type of material it will create.)

Publishers provide the organizations with online access to their peer-reviewed biomedical journals, immediately upon publication. Content from back issues of scholarly journals will also be available to the voluntary health organizations, broadening access to include a vast array of research articles. (source)

According to Aime Ballard-Wood, patientinform.org is broadening their scope to more health topic areas, and hopes to have an updated website online soon. They're also working on creating a searchable index, which could be a lot like the database of summaries I envisioned in my post. I hope this works out!

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There's a similar site in the UK, I think run by the NHS. Ben Goldacre sings its praises occasionally. I can't find it at the moment, though. Bum.

After wandering around the site for a while, I gave up. I did not find a search box that I could use to search for information about a specific condition, nor did I find any well organized links to resources on specific conditions. I do not understand why these organizations feel we need another consumer information site. What is wrong with MedlinePLUS (medlineplus.gov)? I highly recommend it for its user friendly approach to health information.

As I mentioned in the post, Elsie, the organization is currently working on both a site redesign and making the summaries searchable. Currently you get the summaries through the partner sites.

What is "wrong" with MedlinePLUS is that not everyone is proficient enough in the health and scientific jargon to know what search terms they need to use. It's simply that the system isn't geared for a certain type of audience, which is not a fault exactly - nothing can be perfectly geared for every audience - but may point to a need for a bridge.

Thank you for your post, Jessica, and for further clarifying in the comments. The redesigned patientINFORM site will be available quite soon, but other features have not been settled and may take a bit longer. In the meantime, we've attempted to improve the listings of participating organizations with a bit more information about how to find research summaries on their sites. Some of the organizations listed are still gearing up to launch their patientINFORM programs. We'll make every effort to keep our site up to date with details as these programs go live.