Patients can’t get a break. They may be hurting, nauseous, groggy, short of breath, exhausted, or fearful about their future, but they still have work to do. As part of the long-overdue push to make health care more patient-centered and safe, various health-care leaders have been telling patients to do this and that. “Take charge of your health care” has become a buzz phrase, as tips for what patients should do multiply like incoming emails on a sick day.
The to-do lists come from health-care organizations, government agencies, private foundations, and others. For instance, the Agency for Healthcare Research and Quality (AHRQ http://www.ahrq.gov/), the National Patient Safety Foundation (NPSF http://www.npsf.org/), and the American Academy of Family Physicians (AAFP http://familydoctor.org/) have all issued them.
To illustrate, some of the recommended tasks include:
- Gather or write a long list of questions to ask your health-care provider, and bring it along to your next visit. Prioritize your questions because you might get time to ask only a few.
- Research your condition online or at the library so that you can help your doctor or nurse make the right diagnosis.
- Ask all of your health-care providers to wash their hands.
- If hospitalized, use disinfectant wipes on “your bed rails, the TV remote control, the phone, your call button, doorknobs, tabletops, and other surfaces.” Repeat regularly.
- Make sure that all of your doctors know what your other doctors are thinking.
The lists go on and on. A study published in 2009 tallied 160 distinct suggestions as to what patients should do–and those were to enhance safety only. It found little overlap among the tasks prescribed by different organizations. The researchers, led by Saul Weingart, Chief Medical Officer at Tufts Medical Center and a leader in patient-safety efforts, wrote: “Unfortunately, there appear to be too many recommendations to be practical, and some are of dubious value.”
Indeed, scientific studies offer little solid evidence that most of the recommendations actually improve care. They might even backfire: For instance, health-care workers might ease up on safety measures if they think they can rely on patients to prevent mistakes. On top of that, many patients deem it risky to say anything that might offend their doctors. Not that they expect intentional harm, but they worry that peeved health-care providers might delay their care, take their symptoms less seriously, or berate them.
Patients may be right: In an interview study, health-care staff echoed many of the same concerns when reflecting on their own experiences as patients. At work, they felt demoralized by patients who seemed to be checking up on them and said they might distance themselves from such “difficult” patients, hardly a situation ripe for good care.
Given all of that, maybe it’s just as well that patients ignore much of the advice on how to take charge of their health care. More often than not, the tips miss the mark. They show an astonishing lack of insight into the barriers patients face and the vulnerability they often feel when they need medical attention. Likewise, the recommendations show little understanding of the humans who deliver health care. Fixing health care requires more than glib to-do lists; it requires data-driven insight into patients, doctors, and other health-care workers. That’s why I blog.
Photo copyright Elliot Burlingham/123rf.com stock photo
Have you tried to follow any of these or similar tips when seeking health care? If so, how did it go?
If you’re a health-care provider, what do you think of the tips being offered?
If you work for an organization that dispenses such tips, please share your thoughts.
Finally, I’d love to hear from researchers who can address any of these points.
The American Society for Radiation Oncology. What questions should I ask my doctor? Questions to ask about radiation safety. http://www.rtanswers.org/treatmentinformation/questions/safetyquestions.aspx. Accessed on 2/6/14.
Health New England. Questions to ask your healthcare provider. http://www.healthnewengland.com/HNE_members/documents/AskYourProvider_EM.pdf. Accessed on 2/10/14.
Familydoctor.org editorial staff. Tips for talking with your doctor. http://familydoctor.org/familydoctor/en/healthcare-management/working-with-your-doctor/tips-for-talking-to-your-doctor.html.Accessed on 1/15/14.
National Patient Safety Foundation. Checklist for getting the right diagnosis. http://www.npsf.org/for-patients-consumers/tools-and-resources-for-patients-and-consumers/checklist-for-getting-the-right-diagnosis/. Accessed on 2/6/14.
Clancy CM (2010, May 4). Healthcare-associated infections: They can happen to you. http://healthcare411.ahrq.gov/column.aspx?id=641. Accessed on 1/16/14.
Healthwise Staff. Avoiding infections in the hospital. http://www.cigna.com/healthwellness/hw/medical-topics/avoiding-infections-in-the-hospital-abo4383. Accessed on 1/15/14.
National Patient Safety Foundation. Preventing infections in the hospital—What you can do: A consumer fact sheet. http://www.npsf.org/for-patients-consumers/tools-and-resources-for-patients-and-consumers/preventing-infections-in-the-hospital/. Accessed on 1/16/14.
Weingart SN, Morway L, Brouillard, D, et al. (2009, Apr). Rating recommendations for consumers about patient safety: Sense, common sense, or nonsense? The Joint Commission Journal on Quality and Patient Safety, 35(4):206-215. http://www.ncbi.nlm.n.ih.gov/pubmed/19435160.
Berger Z, Flickinger TE, Pfoh E, et al. (2014). Promoting engagement by patients and families to reduce adverse events in acute care settings: A systematic review. BMJ Quality and Safety, 23:548-555. http://dx.doi.org/10.1136/bmjqs-2012-001769.
Berger Z, Flickinger T, Dy S. (2013, Mar). Promoting engagement by patients and families to reduce adverse events. In Making Health Care Safer II: An updated critical analysis of the evidence for patient safety practices. Rockville, MD: Agency for Health Care Research and Quality. Report No. 13-E001-EF. http://www.ahrq.gov/research/findings/evidence-based-reports/ptsafetyuptp.html.
Weingart SN (2013 Feb). Patient engagement and patient safety. AHRQ Web M&M. http://webmm.ahrq.gov/perspective.aspx?perspectiveID=136. Accessed on 2/13/14.
Schwappach DLB. (2010). Review: Engaging patients as vigilant partners in safety: A systematic review. Medical Care Research and Review, 67:119-148. Epub 2009 Aug 11. http://dx.doi.org/10.1177/1077558709342254.
Kinnersley P, Edwards A, Hood K, et al. (2008 July 31). Interventions before consultations to help patients address their information needs by encouraging question asking: systematic review. http://dx.doi.org/10.1136/bmj.a485.
Lyons M. (2007). Should patients have a role in patient safety? A safety engineering view. Quality and Safety in Health Care, 16:140-142. http://dx.doi.org/10.1136/qshc.2006.018861.
Entwistle VA, McCaughan D, Watt IS, et al. (2010). Speaking up about safety concerns: multi-setting qualitative study of patients’ views and experiences. Quality and Safety in Health Care, 19:e33. http://dx.doi.org/10.1136/qshc.2009.039743.
Frosch DL, Suepattra SG, Rendle KAS et al. (2012). Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Affairs, 31(5):1030-1038. http://dx.doi.org/10.1377/hlthaff.2011.0576.
Doherty C, Stavropoulou C. (2012). Patients’ willingness and ability to participate actively in the reduction of clinical errors: A systematic literature review. Social Science and Medicine, 75:257-263. Epub 2012 Apr 13. http://dx.doi.org/10.1016/j.socscimed.2012.02.056.
Hrisos S, Thomson R. (2013, Nov). Seeing it from both sides: Do approaches to involving patients in improving their safety risk damaging the trust between patients and healthcare professionals? An interview study. PLOS One, 8(11):e80759. http://dx.doi.org/10.1371/journal.pone.0080759.