1. Bringing it Back to the Patient Leveraging the Use of Data and Technology for Innovative Insights Leading to Patient Engagement and Influence Amy Smalarz, PhD President, Founder of Strategic Market Insight 28 February 2014

2. People First, Patients Second  Traditionally, research has emphasized the development of either pharmaceuticals to treat diseases or care management programs to tell people how to deal with their diseases.  I believe we are taking the wrong approach.  Instead of focusing on the disease, we need to focus on the patient as a person with a disease.  This would result in a shift from the frame of “a disease within a patient” to “a patient with a disease.”

3. The “personal” influence on Outcomes What is the impact of a person’s situation on their clinical outcomes?

4. Analogous Goals  Everyone is talking about patient engagement, improving adherence, quality measures, etc. because we have similar goals of positively impacting patients’ lives while improving quality and decreasing healthcare costs. Where we were Where we are Where we need to go

5. What data are currently used?  Randomly controlled clinical trials  Specified patient population  Clinical data and some patient-reported outcomes  Retrospective analyses  Administrative claims data  Clinical and laboratory data  Observational studies  Sometimes random, sometimes convenient samples of patients  Clinical data and some patient-reported outcomes

6. What’s missing?  Patient characteristics, beyond their demographic and clinical characteristics Who are patients, as people? What are their lifestyles and/or living circumstances?

7. Why is this important?  Unless we understand patients as people, we cannot work with them, engage them and influence them to improve their health and wellness.  Example: Not all diabetics are the same. Two 50-year old women come to the doctor’s office are both diagnosed with Type II Diabetes Mellitus. One of them works 2 jobs and has 2 children in college; the other woman volunteers and does not have any children. Their lifestyle and living circumstances may affect their:  Time for exercise  Financial means to eat the “right” foods  Renting vs. owning a home/condo  Location – urban, suburban All of these areas influence the person’s level of engagement and we only know if we ASK.

8. Partnerships: The Cornerstone of Success

9. Developing and Supporting Partnerships Development of partnerships requires relationships; relationships require trust; and trust requires respect  By acknowledging the person’s circumstances, they are more likely to be honest with their provider  Go beyond “Shared-Decision Making”  Trust is developed/earned, which can lead to a Partnership between the person and clinician But…Neither side is guided nor prepared to engage the other, acknowledging each other’s expertise, perspective or needs.

10. Cultural Challenges for Providers  Development of partnerships requires relationships; relationships require trust; and trust requires respect  Providers’ professional training does not embed the essential attitudes or communication skills and neither side is guided nor prepared to engage the other, acknowledging each other’s expertise, perspective or needs.  Physicians are trained to believe it is important to have the answer and are socialized to be in charge and desire to act as autonomous decision- makers in the care of their patients (Godolphin, 2009; AMA, 2008).  Providers need to be supported and encouraged to relinquish their role as the single, paternalistic authority and be trained to become more effective partners in care with their patients and to allow patients more of an opportunity to participate in the treatment and care decisions.

11. People/Patient Challenges  Patients have been ‘trained’ to present a problem or issue and then let the ‘expert’ (i.e. provider) work it out and provide one or multiple options or solutions.  We know that people want to be involved in decision making and want to participate, whether it be through representation or via full/total individual participation.  Studies have demonstrated that people who participate in decision making have higher level of productivity and satisfaction (Bridges, 2007).  However, in order for partnerships to become engrained in how we conduct ourselves and the way of business, a culture shift is needed toward development of partnerships to replace the common denominator of 2 one-way conversations that transpire today.

12. Where can we get these data? Surveys currently collecting descriptive details of people in the United States  Family and household composition  Income  Interests, hobbies  Ailments  Buying, purchasing data  Who they trust for healthcare information  Combining what is thought of as traditionally marketing communication data, this primary research and large database can be used toward advanced analytic methodologies  Screening tools can be developed for people to answer on-line or while they are in the waiting room – and their answers can inform clinicians and providers on the person’s potential level of engagement and influence Data collected via provider notes  Not just information that a person switched medication but WHY they switched  What side effects are “regular” patients experiencing?

13. Where can we go from here? If we are serious about patient engagement, we need to take the necessary steps to define, measure and report it.  First, clearly define what we mean by patient engagement  That may differ by stakeholder, i.e., patients, providers, insurance companies, pharmaceutical companies  “Triangulate” definitions of patient engagement to be inclusive  Once it’s defined, we can then take steps to identify the data needed to measure it  What will we measure?  What data will be collected?  How will data be collected?  How will the data be analyzed?  How will the data be used?  Who will be held accountable for what?

14. Bringing it back to the patient….  We all have limited time and resources….and we don’t want to waste either  People want to be healthy and well  We all want better patient adherence, which can lead to improved outcomes and health and wellness  But, first, we need to understand patients as people; there isn’t a “one size fits all” solution  Better information leads to better data, which leads to better decision making, which leads to better outcomes, which leads to better health and wellness OR

15.  Engage providers of patient care and inform them of not only the scientific and medical advances currently available but about the advances the scientific community is making in the way of using and interpreting patient data that is currently available  The more we know about patients, the better we can include and engage them which will enable them to make better health care decisions  As patients’ health care decisions improve, the better their interaction with the healthcare system will be which can result in less and/or wiser health care decisions - which may result in wiser medical spend  Go beyond reporting clinical outcomes and explore the PERSON with the disease, not just the disease and clinical characteristics of people presenting with the disease  Inform health care policy by equipping health care providers and payers with better information about who their patients and/or members are and the methods they are using to make their healthcare decisions

16. Amy Smalarz, PhD Strategic Market Insight www.strategicmarketinsightllc.com 1.978.429.8744 (office) 1.877.958.8334 (toll-free) amysmalarz@strategicmarketinsightllc.com Thank you!