There is no shortage of important topics in health care; the U.S. faces thousands of challenges, from the prevalence of childhood obesity and hospital infection rates, to the affordability of new specialty medicines and end-of-life care.  Our delivery system is far more expensive and far less safe and effective than it could be.  Providers deliver care of ever-increasing complexity within brief, often-rushed encounters, leaving limited time for dialog.  So, why invest resources and attention on an individual’s preferences about treatment?

The answer is simple: consumer involvement in care decisions results in safer, more effective, and less expensive health care. (1, 2, 3) Additionally, consumers who participate in care decisions report higher satisfaction, faster recovery from illness and better quality of life. (4, 5) Finally, care plans resulting from a shared-decision-making process result in better medication adherence and clinical outcomes. (6, 7, 8)

No one is better positioned than patients and their families to guard against the nearly 100,000 estimated preventable deaths per year from medical errors.  Indeed, a recent study found that patients who reported the highest levels of active participation in their care had half the rate of medical errors in the hospital as those with low participation. (9)

While clinical standards of care serve a useful purpose, in many cases those standards do not incorporate individual needs and preferences. Evidence suggests that doctors routinely misjudge what patients want.  When asked independently about their primary health care goals and intentions to meet those goals, pairs of doctors and patients disagree more often than not. (10) When in agreement, treatments result in better outcomes and better adherence to doctor recommendations. (11)

Furthermore, when considering their own health, patients often weigh benefits and harms differently than their doctors.  When provided with unbiased information about pros and cons of discretionary procedures, as many as 25 percent of patients scheduled for surgery choose an alternative treatment, resulting in better functional outcomes and satisfaction. (12)

Because of avoided surgeries, higher rates of adherence, prevented medical errors, and better condition management that accompany active participation, consumer choice also results in lower overall costs.  Also, due to individual differences in preference about such things as quality of life and length of life, economists estimate huge potential savings from choosing cost-effective options based on individual preferences rather than choosing one “most effective standard” approach across all patients. (13)

Numerous public agencies have called for increased consumer involvement in care decisions and greater transparency in cost and quality, including the Agency for Healthcare Research and Quality, Institute for Safe Medication Practices, National Patient Safety Foundation, and The Joint Commission’s Speak Up initiative. (14, 15, 16, 17) Additionally, national health plans, such as Aetna, have created websites to allow members to compare price a quality among providers and hospitals. (18) The rising profile of consumer involvement is also indicated by the quickening pace of business innovation: numerous startups, such as Castlight Health, change:healthcare, Healthcare Blue Book, and Monocle Health Data, are developing new tools, data sources, presentation formats, and communication strategies to put the right information in consumers’ hands at the right time. (19, 20, 21, 22)

Despite a growing body of evidence about the important role consumers can and should play in improving health care, the system often discourages active participation. Too many patients are reluctant to ask providers to take known precautions. (23) The leader of the Centers for Medicare and Medicaid Services, Dr. Donald Berwick, acknowledges that the much-touted “patient-centered” model now being advanced still sacrifices patient preferences in favor of provider convenience or outdated procedural rules. (24)

There remains a need for science that identifies factors that encourage and speed adoption of patient involvement, and evaluates programs and tools designed to facilitate patient choice-making.  As more consumers are encouraged to play significant roles in selecting and paying for their care, businesses and health plans need better information about how to present unbiased information and encourage prudent decisions.  Altarum’s Center for Consumer Choice in Health Care intends to help build that scientific knowledge base.

There has never been a more critical time for citizens to influence the future of health care.  Current health care cost trends are unsustainable; medical error rates are unacceptable; obesity and inactivity rates continue to grow to record levels; and clinical quality remains inconsistent. Only one stakeholder group has the ability to reverse all these trends: consumers who become active participants in care decisions.

At Altarum, our Center for Consumer Choice in Health Care is supporting a collaboration to develop real-time social media indicators of consumerism attitudes and activities in health and health care. Stay tuned for upcoming developments.

References
1. Weingart, S. N., Zhu, J., Chiappetta, L., Stuver, S. O., Schneider, E. C., Epstein, A. M., et al. (2011, June). Hospitalized patients’ participation and its impact on quality of care and patient safety. International Journal for Quality in Health Care,  23(3), 269–277.

2. Remmers, C., Hibbard, J., Mosen, D. M., Wagenfield, M., Hoye, R. E., & Jones, C. (2009, October–December). Is patient activation associated with future health outcomes and healthcare utilization among patients with diabetes? Journal of Ambulatory Care Management,  32(4), 320–327.

3. Kennedy, A. D., Sculpher, M. J., Coulter, A., Dwyer, N., Rees, M., Abrams, K. R., et al. (2002, December 4). Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA,  288(21), 2701–2708.

4. Weingart, S. N., 2011.

5. Clark, N. M., Janz, N. K., Dodge, J. A., Mosca, L., Lin, X., Long, Q., et al. (2008, September). The effect of patient choice of intervention on health outcomes. Contemporary Clinical Trials,  29(5), 679–686.

6. Naik, A. D., Kallen, M. A., Walder, A., & Street, R. L., Jr. (2008, March 18). Improving hypertension control in diabetes mellitus: the effects of collaborative and proactive health communication. Circulation,  117(11), 1361–1368.

7. Lorig, K., Ritter, P. L., Laurent, D. D., Plant, K., Green, M., Jernigan, V. B., et al. (2010, June). Online diabetes self-management program: A randomized study. Diabetes Care,  33(6), 1275–1281.

8. Bloomfield, H. E., Krause, A., Greer, N., Taylor, B. C., MacDonald, R., Rutks, I., et al. (2011, April 5). Meta-analysis: Effect of patient self-testing and self-management of long-term anticoagulation on major clinical outcomes. Annals of Internal Medicine,  154(7), 472–482.

9. Weingart, S. N., 2011.

10. Heisler, M., Vijan, S., Anderson, R. M., Ubel, P. A., Bernstein, S. J., & Hofer, T. P. (2003, November). When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make? Journal of General Internal Medicine,  18(11), 893–902.

11. Heisler, M., 2003.

12. O’Connor, A. M., Bennett, C., Stacey, D., Barry, M. J., Col, N. F., Eden, K. B., et al. (2007, September–October). Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Medical Decision Making,  27(5), 554–574.

13. Basu, A., & Meltzer, D. (2007, March–April). Value of information on preference heterogeneity and individualized care. Medical Decision Making,  27(2), 112–127.

14. Agency for Healthcare Research and Quality. (2000, February). 20 tips to help prevent medical errors. Retrieved from http://www.ahrq.gov/consumer/20tips.htm.

15. Institute for Safe Medication Practices. (2011). Consumers can prevent medication errors. Retrieved from http://www.ismp.org/consumers/default.asp.

16. National Patient Safety Foundation, Patient and Family Advisory Council. (2003). National agenda for action: Patients and families in patient safety. Retrieved from http://www.npsf.org/download/AgendaFamilies.pdf.

17. The Joint Commission. (2011). Speak Up Initiatives: The Joint Commission’s award-winning patient safety program. Retrieved from http://www.jointcommission.org/speakup.aspx.

18. Aetna. (2011). Individuals & families. Retrieved from http://www.aetna.com/individuals-families-health-insurance/index.html.

19. Castlight Health. (2011, September 12). Castlight Health: Take control of your health. Retrieved from http://www.castlighthealth.com/.

20. change:healthcare. (2011, September 14). change:healthcare: The cost transparency solution. Retrieved from http://www.changehealthcare.com/.

21. Healthcare Blue Book. (2011). Healthcare Blue Book: Your free guide to fair healthcare pricing. Retrieved from http://healthcarebluebook.com/.

22. Monocle Health Data. (2010). Monocle Health Data. Retrieved from https://www.monoclehealth.com/.

23. Hibbard, J. H., Peters, E., Slovic, P., & Tusler, M. (2005, October). Can patients be part of the solution? Views on their role in preventing medical errors. Medical Care Research and Review,  62(5), 601–616.

24. Berwick, D. M. (2009, July–August). What “patient-centered” should mean: Confessions of an extremist. Health Affairs (Millwood),  28(4), w555–w565.