Empowered Patients = ePatients

By Rachel Walden |

A new, freely available, open-access journal that launched this month reflects a position Our Bodies Ourselves has long held: Healthcare is better, and people are healthier and more empowered, when individuals are informed and can actively participate in their own care.

The Journal of Participatory Medicine, launched at last week’s Connected Health Symposium in Boston, will publish online peer-reviewed articles that “explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes.” The inaugural issue includes articles from all stakeholders, including patients, healthcare providers, payers, and others.

The journal’s significance is underscored by the fact that current or former editors of three of the most prominent medical journals – JAMA, BMJ, and the Annals of Family Medicine – also contributed to the first issue. As Amy Romano at Science & Sensibility points out, even the journal’s peer review process is participatory and values the input of all stakeholders, especially patients themselves.

The journal is being published by the relatively new Society for Participatory Medicine. The organization also has a blog, e-patients.net, which focuses on and includes stories from patients becoming informed, connecting with other patients, finding support, and exploring potential treatments for their healthcare concerns.

The existence of this organization and its publications reflect a growing trend toward patient involvement in health care that has been inspired and enabled by the internet. The Pew Internet and American Life Project released a report earlier this year indicating that 61 percent of American adults look online for health information, and that “six in ten e-patients … say their most recent search had an impact, mostly minor, on their own health or the way they care for someone else.”

More than half said information they found online lead them to ask their physician new questions or to get a second opinion on their care.

The internet is also enabling access to personal health records and new ways of collecting and sharing health data. The Society and the Journal will promote efforts to encourage these developments while protecting patient confidentiality.

As one physician wrote of the e-patient phenomenon in 2008:

Patients want information, ideally tailored to their needs. They want to discuss this with their physicians without being shooed away, and would appreciate getting pointers. They even want access to their test results and medical records. Although many physicians feel threatened by all this, engaging the patient as a partner in her own care can be quite gratifying, improves patient satisfaction, and may even lead to better outcomes.

As an organization that has long held that women can become their own health experts and that women, as informed health consumers, are catalysts for social change, we agree.

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4 Comments

  1. Words can barely express how thrilled I am that our communities have found each other.

    I was a recent graduate when OBOS first roared onto the scene. I well remember the commotion about uppity women being taught all that explicit stuff about how their innards work.

    As the e-patient movement grew this year into the Society, I’ve said we need to teach people about precedents – that this isn’t new. The two things I’ve always cited were Benjamin Spock’s “Trust yourself. You know more than you think you do” and OBOS.

    It is SUCH a pleasure to meet you, and I’m so glad Amy Romano made the connection.

  2. As a patient with chronic illness, I cannot fully express how much my partnership with my various specialists is helping me through this journey. I’ve been fortunate enough to be paired with a health provider who grants access to physicians via email, web access to medical records including test results and vitals, and most importantly, access to information about my condition. The very day my diagnosis was confirmed I was able to log onto the My Health At Vanderbilt page and read about the conditions I had. That information has helped me manage my difficult situation with a lot less expense and aggravation.

    I know there are still doctors out there who would like to retain the distance and mystique afforded physicians for much of the last century. Unfortunately, the side effects of that distance often included ill-informed patients who suffered needlessly.

  3. Rachel says:

    Katherine, thanks for sharing your experience here.

    (And, as a side note, the medical librarians I work with help provide the links to condition info in MHAV, so I’m personally glad they have been useful to you!)