This week we are excited to welcome Mary Ray as guest host. As co-founder and COO of MyHealthTeams, Mary draws from her deep consumer Internet and mobile experience, thousands of conversations with those diagnosed with chronic disease, as well as caregivers. Like all of us, she also taps into her personal experience with friends and family members living with chronic conditions. She is passionate about building communities that empower individuals, families, and caregivers to share experiences and life hacks that help them actively manage health and wellness while living with a chronic condition. We appreciate her unique insights into patient outcomes and engagement!
Previously, Mary has held executive positions with established leaders such as IAC and Sony as well as with startups across the mobile, digital media and consumer technology landscape. She is a graduate of the College of William & Mary School of Business and George Mason University.
Please join Mary Ray on Tuesday, August 8th at 8:30pm ET (GMT-4) for her topic – The Successful Combination of Patient Outcomes & Engagement.
Blog post by Mary Ray.
Tell me and I forget. Teach me and I remember. Involve me and I learn.
~ Benjamin Franklin
As patients, not only do we need to trust our doctors, we want to. But trust takes time, and with all that must be discovered, discussed, deliberated on within limited appointments in clinical settings, trust, much less clear communication is challenging. A doctor’s deep medical knowledge is usually the driving force for why PROs (patient-reported outcomes) may not be voiced or heard. This is understandable as patients do not always have the knowledge and confidence to speak with their doctor, and yet, they carry the burden of following through on the treatment plan.
This results in an expensive communication gap between doctors and patients. According to the New York Times and the NEJM, this contributes to the $289Billion cost to all Americans due to non-adherence. From WHO, we find other key factors are socio/economics, the healthcare system, the condition or therapy, and the patients physical or psychological well-being. A path to shoring this up would be to couple what I call “outcome-alignment” with a mapped-out engagement strategy that both a doctor and patient or caregiver can co-create.
Outcomes for a Real Patient
Susan and her oncology team wanted to beat her breast cancer. Yet, at 30, she and her husband were also wanting to start a family. Simply beating cancer wasn’t solely her goal. She also wanted to have children afterward. By consulting her oncologist for treatment options that took her family planning goals into account, she was able to weigh the risks and consider conception options her team and other fertility specialists could inform her about. Lesson? It’s worthwhile to find out what the person’s QoL (quality of life goals) are, so that related experts (say a fertility specialist) can be consulted.
One way to bridge the gap of understanding from what the outcome goals are is to establish the practice of empathetically processing a patient’s definition of a positive health outcome in combination with the medical perspective of a successful health outcome. Then, when a doctor and a patient are on the same page about how the outcome is defined… there’s the ongoing engagement. In fact, Jodi Halpern in The Permanente Journal reinforces this in her article, “Gathering the Patient’s Story and Clinical Empathy.”
Often ‘getting back to normal’ – including mobility, social engagement, returning to day to day activities – is the general goal for any patient who wants to heal, be cured, and be treated. The challenge is understanding how that translates into outcomes, and what type of engagement is required to get there. Engagement may mean affording co-pays, getting to and from appointments, remembering to take pills, staying social, or connecting with others who really understand what you’re going through.
There is a consensus that an engaged patient, an involved patient, is more likely to achieve better health outcomes. By mapping out what defines engagement for a patient and their specific diagnosis and treatment path, and discussing possible hurdles to engagement, the likelihood of patient engagement is greater. For a more in-depth discussion, Judith H. Hibbard and Jessica Greene’s outstanding article in Health Affairs is a must-read. Within “What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs,” this summary stands out:
The research shows that more activated patients have better health outcomes and better care experiences than patients who are less activated. Studies also show that activation [patient engagement] can be modified and increased over time—and that certain interventions are effective in increasing activation. This has been shown with medically indigent patients, different racial and ethnic groups, and patients with multiple chronic conditions.
To paraphrase a viewpoint shared on The JAMA Network: the idea that healthcare decisions should take into account a patient’s outcome goals is not new. However, we learn from Naik, et al. in “Patient autonomy for the management of chronic conditions: a two-component re-conceptualization” that the practice of translating patient goals into actual care is rare, yet necessary in a growing population of individuals living with more than one chronic condition.
I hope to engage all of you and discuss your insights and experiences surrounding patient engagement and outcomes. This is part of the ongoing opportunity to delve into your experience as well as the popular research so that the gap between patient expectations and actual outcomes is eliminated.
Please join me as I guest-host the weekly #hcldr tweetchat on Tuesday August 8th at 8:30pm ET (for your local time click here). We will be discussing the following topics:
T1: What should the definition of a good outcome in healthcare be?
T2: What’s your understanding of patient activation/engagement?
T3: What can we learn outside of the healthcare sectors for what works with outcomes and engagement? From education, retail, etc.?
T4: What are some good examples of healthcare providers aligning medical outcomes with patient-defined outcomes?
About MyHealthTeams – (content provided by Mary Ray)
MyHealthTeams believes that if you are diagnosed with a chronic condition, it should be easy to find and connect with others like you. Co-founded by Mary Ray and Eric Peacock, MyHealthTeams creates social networks for people living with a chronic health condition. More than one million people have joined one of the company’s 24 highly engaged communities focusing on the following conditions: Crohn’s and colitis, multiple sclerosis, lupus, fibromyalgia, breast cancer, rheumatoid arthritis, psoriasis, irritable bowel syndrome, Parkinson’s, Alzheimer’s, epilepsy, hemophilia, depression, heart disease, type 2 diabetes, COPD, chronic pain, migraines, food allergies, obesity, HIV, PCOS, endometriosis and autism. MyHealthTeams’ social networks are available in eight countries.
Resources for further study
Boissy, MD, MA, Adrienne. “Patient Engagement vs. Patient Experience.” NEJM Catalyst, May 17, 2017. http://catalyst.nejm.org/patient-engagement-vs-patient-experience/.
Brody, Jane E. “The Cost of Not Taking Your Medicine.” The New York Times, April 17, 2017, sec. Well. https://www.nytimes.com/2017/04/17/well/the-cost-of-not-taking-your-medicine.html.
Epstein, David. “When Evidence Says No, but Doctors Say Yes.” The Atlantic, February 22, 2017. https://www.theatlantic.com/health/archive/2017/02/when-evidence-says-no-but-doctors-say-yes/517368/.
Frakt, Austin. “Simply Put: Physician-Patient Information Asymmetry.” The Incidental Economist, February 11, 2011. http://theincidentaleconomist.com/wordpress/simply-put-physician-paytient-info-asy/.
Freeman, Tom. “Physician, Explain Thyself: Science English vs Lay English.” Stroppy Editor, November 27, 2014. https://stroppyeditor.wordpress.com/2014/11/27/physician-explain-thyself-science-english-vs-lay-english/.
Halpern, M.D., Jodi. “Gathering the Patient’s Story and Clinical Empathy.” The Permanente Journal – The Permanente Press – Kaiser Permanente – Permanente Medical Groups, 2012. http://www.thepermanentejournal.org/issues/2012/winter/4200-empathy.html.
Halpern, M.D., Jodi. “The Limits of Medical Consent.” Philosophy Talk, May 7, 2017. https://www.philosophytalk.org/shows/limits-medical-consent.
Hibbard, Judith H., and Jessica Greene. “What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs.” Health Affairs 32, no. 2 (February 1, 2013): 207–14. doi:10.1377/hlthaff.2012.1061.
Hoffman, Jan, and Sabrina Tavernise. “Vexing Question on Patient Surveys: Did We Ease Your Pain?” The New York Times, August 4, 2016, sec. Health. https://www.nytimes.com/2016/08/05/health/pain-treatment-hospitals-emergency-rooms-surveys.html.
Mind Tools. “SMART Goals: How to Make Your Goals Achievable.” Accessed August 3, 2017. https://www.mindtools.com/pages/article/smart-goals.htm.
Naik, Aanand D., Carmel B. Dyer, Mark E. Kunik, and Laurence B. McCullough. “Patient Autonomy for the Management of Chronic Conditions: A Two-Component Re-Conceptualization.” The American Journal of Bioethics: AJOB 9, no. 2 (February 2009): 23–30. doi:10.1080/15265160802654111.
Rosenbaum, Lisa, and William H. Shrank. “Taking Our Medicine — Improving Adherence in the Accountability Era.” New England Journal of Medicine 369, no. 8 (August 22, 2013): 694–95. doi:10.1056/NEJMp1307084.
Rowe, Mary Budd. “Wait Time: Slowing Down May Be A Way of Speeding Up!” Journal of Teacher Education 37, no. 1 (January 1, 1986): 43–50. doi:10.1177/002248718603700110.
Sekeres, MD, Mikkael A., and Timothy D. Gilligan, MD. “Informed Patient? Don’t Bet On It.” The New York Times, March 1, 2017, sec. Well. https://www.nytimes.com/2017/03/01/well/live/informed-patient-dont-bet-on-it.html.
Tinetti, Mary E., Aanand D. Naik, and John A. Dodson. “Moving From Disease-Centered to Patient Goals–Directed Care for Patients With Multiple Chronic Conditions: Patient Value-Based Care.” JAMA Cardiology 1, no. 1 (April 1, 2016): 9–10. doi:10.1001/jamacardio.2015.0248.
WHO. “Adherence To Long-Term Therapies: Evidence For Action.” WHO, 2003. http://www.who.int/chp/knowledge/publications/adherence_report/en/.
Zuger, MD, Abigail. “What Patients Don’t Tell Their Doctors.” Well, January 13, 2014. https://well.blogs.nytimes.com/2014/01/13/what-patients-dont-tell-their-doctors/.
Photo Credit: http://imgur.com/a/fA431