How Patient Engagement Improves Outcomes: A Fact Sheet

I recently scanned the literature for the Society for Participative Medicine, finding these key conclusions:

Domain 1:  Patient Experience

Participation by inpatients protects against adverse events, reducing them by half (Weingart et al, 2011).

Multidisciplinary collaborative patient rounds have created a strong trend of overall decreased mortality in New Hampshire's Concord Hospital (Kendall, 2003).

A medical home for children with special health care needs reduced hospitalization by more than 20% (58% vs. 43%), and nearly cut in half the number of parents missing 20 days or more of work (26% vs. 14%) (Davidson et al, 2004).

Patients who participate more actively in physical therapy after hip fracture achieve 25% more of their self-reported pre-fracture function (Talkowski et al, 2009).


Domain 2:  Health Literacy

Interactive computer based support systems have positive effects on knowledge, social support, and clinical outcomes (Coulter and Ellins, 2007).
Enabling patients to see their doctors' progress notes in Open Notes led two-thirds of patients to report they are now more likely to take medications as prescribed (Delbanco et al., 2012).


Domain 3:  Choosing Treatment

Using PatientsLikeMe enables epilepsy patients to have fewer Emergency Room visits (Wicks et al, 2012).

Genetic testing for BRCA1/2 leads women to select risk-reducing surgeries, post-menopausal hormone therapy, and pre-implantation genetic diagnosis (Lorizio et al, 2011).    

Patient participation in medical decisions has been linked to improvements in adherence to treatment plans (Golin et al, 2006).

Shared Decision Making studies show:
Mastectomies were reduced by 74% (Whelan et al, 2004).

Prostatectomies were reduced by 33% (Auvinen et al, 2001).

Cardiac revascularization surgery was reduced by 29%  (Morgan et al, 2000).

Decision aids were associated with 26% fewer hip replacement surgeries, 38% fewer knee replacements and 12-21% lower costs over a six-month period (Arterburn et al, 2012).

Surgery for herniated disks was reduced by 32% (47% vs. 32%), and back pain was significantly lessened (Deyo et al, 2000).

Hysterectomies were reduced by 21%, with cost reduction averaging $1,184 (Kennedy et al, 2002).  


Domain 4:  Self-Management

Patient activation - having the knowledge, skills and confidence to manage one's health - is positively related to 12 patient outcomes, e.g., having an Emergency Department visit, having A1c, HDL, and triglyceride levels in the normal range, etc. (Greene & Hibbard, 2012).

A systematic review article on family-centered care for children with special health needs concluded that most of the 24 studies found at least one association of family-centered care with a positive outcome (Kuhlthau et al, 2011).
Educational and self-help programmes that are actively supported by clinicians improve health outcomes for patients with depression, eating disorders, asthma, diabetes, and hypertension (Coulter and Ellins, 2007).

Domain 5:  Health Promotion

Patient-centered care in outpatient visits (defined by Davis Observation Codes:  patient activation like patient questions, chatting, and health knowledge; counseling, compliance, nutrition, exercise and health promotion) decreased specialty care visits, hospitalizations, and laboratory and diagnostic tests, and reduced total medical charges by about one-third (Bertakis et al, 2011).
Behaviour therapy for patients with advanced lung cancer produced positive effects in physical functioning (Cormer et al, 1996).

Domain 6:  Public Engagement

Online patient communities that have been designed to ascertain clinical outcomes can identify the efficacy, or inefficacy, of certain drugs.  PatientsLikeMe, for example, ascertained that lithium was not effective for its community of patients with ALS (Wicks et al, 2011).



REFERENCES

David Arterburn et al, "Introducing Decision Aids at Group Health Was Linked to Sharply Lower Hip and Knee Surgery Rates and Costs," Health Affairs, Oct. 2012.

Auvinen A, Hakama M, Ala-Opas M, Vornanen T, Leppilahti M, Salminen P, et al.A randomized trial of choice of treatment in prostate cancer: the effect of intervention on the treatment chosen. BJU International 2004;93(1):52-6. Auvinen A, Vornanen T, Tammela T L, Ala-Opas M, Leppilahti M, Salminen P, et al.A randomized trial of the choice of treatment in prostate cancer: design and baseline characteristics. BJU International 2001;88(7):708-15.  

Bertakis KD, Azari R., Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med. 2011 May-Jun;24(3):229-39.  See pages 229, 233 & 236.

Corner J. et al.  "Non-pharmacological intervention for breathlessness in lung cancer," Palliat Med 1996;10:199-305.

Angela Coulter and Jo Ellins, Effectiveness of strategies for informing, educating, and involving patients [a systematic review] at BMJ 2007; 335 doi: http://dx.doi.org/10.1136/bmj.39246.581169.80

Davidson EJ et al, "The pediatric alliance for coordinated care:  Evaluation of a medical home model," Pediatrics,  113.5, May 2004, pS1507.

Tom Delbanco, Jan Walker, Sigall K. Bell, Jonathan D. Darer, Joann G. Elmore, Nadine Farag, Henry J. Feldman, Roanne Mejilla, Long Ngo, James D. Ralston, Stephen E. Ross, Neha Trivedi, Elisabeth Vodicka, Suzanne G. Leveille; Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead. Annals of Internal Medicine. 2012 Oct;157(7):461-470.

Deyo RA, Cherkin DC, Weinstein J, Howe J, Ciol M, Mulley AG. Involving patients in clinical decisions: impact of an interactive video program on use of back surgery. Medical Care 2000;38(9):959-69.

Golin, C.E., M.R. DiMatteo, and L. Gelberg (1996), "The role of patient participation in the doctor visit: Implications for adherence to diabetes care," Diabetes Care, 19, 1153-64.)  

Greene, J and Hibbard, JH, "Why does patient activation matter?:  An examination of the relationships between patient activation and health-related outcomes," Journal of General Internal Medicine, May 2012, 27(5), pages 520-6.

Kendall, EM, "Improving patient care with collaborative rounds," American Journal of Health-System Pharmacy, Vol. 60, Jan. 15, 2003, pages 132-135.

Kennedy AD, Sculpher MJ, Coulter A, Dwyer N, Rees M, Abrams KR, et al.Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA 2002;288(21):2701-8.

Kuhlthau, KA et al., "Evidence for family-centered care for children with special health care needs:  A systematic review," Academic Pediatrics, Vol 11, No. 2, pages 136-143.

Lorizio W, et al, "Pharmacogenetic testing affects choice of therapy among women considering tamoxifen treatment," Genome Med. 2011; 3(10): 64.   Published online 2011 October 4. doi:  10.1186/gm280

Morgan MW, Deber RB, Llewellyn-Thomas HA, Gladstone P, Cusimano RJ, O'Rourke K, et al. Randomized, controlled trial of an interactive videodisc decision aid for patients with ischemic heart disease. Journal of General Internal Medicine 2000;15(10):685-93.

JB Talkowski et al, "Patient Participation and Physical Activity During Rehabilitation and Future Functional Outcomes in Patients After Hip Fracture," Arch Phys Med Rehabil Vol 90, April 2009.

Weingart SN et al, Hospitalized patients' participation and its impact on quality of care and patient safety.  Int J Qual Health Care. 2011 Jun;23(3):269-77.

Whelan T, Levine M, Willan A, Gafni A, Sanders K, Mirsky D, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA 2004; 292(4):435-41.  

P Wicks et al, "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm," Nature Biotechnology, Vol. 29, No 5, May 2011, pages 411-414.

P Wicks et al., "Perceived benefits of sharing health data between people with epilepsy on an online platform," Epilepsy & Behavior, Vol 23, #1, Jan. 2012, pages 16-23, Table 2.