Twitter for the engaged patient: A curated stream of new evidence

Since 1992, I have advocated for all of us to have the information, support and guidance we need to act to improve our health and get the most from our health care. I believe – and there is considerable evidence to back me up – that we do better when we participate in our care to the extent we are able.

As someone who has been diagnosed with several different types of cancer, I know the size and shape of the challenge we face in getting the most out of our care. We not only need to know about our specific diseases and treatments and what we can do about them, but we also need to know something about how our care is organized and about changes in general health knowledge and medical practice that affect how we make use of the resources and services available to us. Then we have to act on our own behalf or on behalf of our child, spouse or parent. The organization I direct, the Center for Advancing Health, has mapped out tasks that are now ours — the many actions we must take to find good health care and benefit from it.

Every weekday, I tweet a carefully curated stream of new evidence, analysis and commentary that covers all the health and health care angles that we – sick or well – might need to know about. I tweet material from major news outlets, peer-reviewed literature, blogs and magazines in the belief that to the extent possible, thoughtful consideration of emerging information and understandings about health and health care will serve us best.

Here’s why I tweet what I tweet:

  • It has never been more important for us to be well-informed about so many aspects of health care – not just our complaint of the moment. Otherwise, when we are passive recipients of care, we risk being on the receiving end of medical errors, receiving suboptimal care or simply not knowing how we can best help ourselves. I aim to tweet things we need to know.
  • Evidence has never been more important. Especially considering revelations that much of the care we receive may not be consistent with evidence of what works. Combined with the rapid pace of new findings, understanding the facts relevant to your situation can be intimidating to patients and health professionals alike. Plus, it’s time consuming for us to sort out quality information from broad assertions and slick advertisements, so I aim to tweet evidence worth noting, with the understanding that next week’s evidence may reverse what we know today.
  • Finding high-quality analysis and commentary that is relevant to the decisions we must make about our health and our care every day is a bear. I know. I wouldn’t be traipsing through 20+ different sites in search of the best pieces if they were located in one place. I aim to tweet links to useful, diverse analyses and findings.
  • Understanding health and health care is not just a matter of digesting new facts. It also includes considering implications of those facts and different perspectives on policies so that the facts have context and meaning. I aim to include articles that tweak easy assumptions, shed light in dark corners and sometimes make me smile.
  • Lastly, it’s funner than heck to do this. I have an insatiable taste for gossip, a fascination with trying to figure out what we really need to know to care for ourselves, a long memory for ineffective-but-nevertheless-repeated health care foibles and an impulse toward snarkiness that occasionally breaks through. Spending a couple of hours each day trawling online for sparkling new findings, blogs, articles and essays that I think you might find interesting is a great way to start the day.

Who would have thought that this tiny aperture – a mere 140 characters – could connect me with so many smart, feisty, tough people who share, amplify, and improve on my efforts to spread this carefully chosen content through their responses, retweets, modified tweets and acknowledgements?

Not me. I am amazed and delighted.

Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

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