Effectively Measuring Patient Engagement: An Investigation Into Patient Engagement And The Patient Activation Measure

For the month of April, I shared pieces I wrote in the process of obtaining my MS in Health Care Administration which I finished up this past fall. I wanted to wrap that up by sharing a teaser of my capstone which is available at my Academia site. Enjoy!

Abstract

This capstone project involves observing how patient activation/engagement and the Patient Activation Measure (PAM) are written about and evaluated. The research presented draws from peer-reviewed journal articles. The hypothesis of this work is that patient activation is beneficial as studied by trustworthy sources. This is true regardless of one’s place within healthcare and should be both implemented and studied more thoroughly. Findings suggest that, while the Patient Activation Measure is useful to measure activation, it is not a comprehensive tool. PAM is not optimized for a variety of marginalized identities including race and ethnicity. The findings of this capstone are useful for educational purposes. Additionally, this project can serve as the basis for additional research.
Keywords: Health Care Administration, Derrick Suehs, patient engagement, patient activation, and the patient activation measure.

Project Overview

The aim of this project is to conduct a case study on furthering patient engagement in health care by investigating current research and best practice information on patient engagement and activation. Also, this project will discuss the potential benefits and disadvantages of full patient engagement from the perspectives of patients, healthcare practitioners, and health systems. The paper will be organized to examine potential benefits of patient engagement for the patient first, then the provider, and finally the health system. This is a Health Care Concept Paper that will have relevance to nearly all stakeholders in health care, from patients to practitioners to insurance companies. Patient engagement is an important topic about which there is some controversy regarding responsibility and efficacy of implementation. This project will help to educate various stakeholders in healthcare regarding the terms utilized in the patient engagement realm, potential benefits of patient engagement, limitations of engagement, and findings of the latest research on the subject. While this aim is broad, the impact of this issue is broad as well. In the end, this project will be aimed primarily at patients, healthcare providers, and administrators within care systems.

The proposed hypothesis for this capstone is two parts: 1) that patient engagement is beneficial overall for stakeholders in healthcare, especially patients, providers, and health systems, and, 2) the patient activation measure is an effective tool for measuring engagement. By exploring the various research studies, the reader will develop a more complete understanding of patient engagement.

While most healthcare organizations experience difficulties in making changes while putting patient satisfaction programs in place, the benefits outweigh the negatives. From an economic standpoint, the pay-for-performance principle instituted by the Patient Protection and Affordable Care Act (PPACA) is a significant vehicle for moving healthcare toward a purposeful focus on clinical quality outcomes and patient experience.

Cost is expected to increase in the short-term while healthcare organizations implement interventions to improve the patient experience. In the long-term, these costs should decrease as patient engagement becomes the norm. Organizations are working to set up systems to measure the efficacy of these efforts.
There remain challenges in improving the results of interventions. Differences in experiences for racial and ethnic groups are still reported (Welnick, et al., 2011). These differences also occur with education status, socioeconomic status, gender identity, sexual orientation, age, and other factors (Millenson, 2016).

Context

The Patient Protection and Affordable Care Act

In March of 2010, the PPACA was signed into law (Healthcare.gov, 2010). Two of the biggest assets for consumers were the requirements for insurance plans to cover people with “pre-existing health conditions, including pregnancy, without charging more” and making it “illegal for health insurance companies to cancel your health insurance just because you get sick” (Healthcare.gov, n.d.). Additional benefits included giving younger adults the ability to stay on their parents’ insurance plans up to age 26, education about the coverage a patient is receiving, and regulations placed on insurance companies surrounding increasing premium rates (Healthcare.gov, n.d.).

One of the strategies of the PPACA is the “shifting from a reimbursement system based on the volume of services provided to one based on the value of care” (Abrams, et al., 2015). The shift to pay-for-performance has been an effective way to put an intense focus on improving quality in all elements of healthcare. Sending a “clear signal to providers that they will need to adapt quickly to incentives that reward appropriate, high-quality care and good patient outcomes” has begun to spark improvements (Abrams, et al., 2015). Since December 2015, Medicare has been planning to assess penalties to “758 hospitals that had high rates of patient safety incidents” (Prina, 2016, p. 375).

On a national level, the PPACA produced more patient-focused outcome measurements and surveys aimed at providing more opportunities for patients to be engaged in healthcare. Additionally, it contributed to the creation of PCORI – the Patient-Centered Outcomes Research Institute (Willis Towers Watson, 2012). PCORI aims to not only bring the voice of the patient into research projects but to ensure research is accessible to everyone (PCORI, 2014). To accomplish this, PCORI provides funding for patient-centered research, takes suggestions for research topics from patients, and includes patients on all advisory boards.

Patient Activation and Engagement

The populations most affected by issues of patient
engagement are providers and patients. Patients of all kinds, but especially those with multiple health concerns or complex conditions, can be influenced by paternalism which subordinates a patient’s free will and informed consent to what a provider might choose. Dangers associated with the practice of paternalism include overlooking the costs associated with treatments, treatments that will not work for a patient’s lifestyle, and treatments that are more likely to cause contraindications and side effects. These consequences lead to a lack of adherence or compliance in care, be it not taking medications as prescribed or skipping lab work and followup appointments.

The historical tradition of paternalism in medicine makes it difficult for patients and providers. Health care practitioners and administrators who support the continued development of patient engagement strategies recognize that there are a vast number of roadblocks, from funding to time in the clinic to including patients on various committees. However, many researchers still believe that improving patient engagement can be accomplished (Hibbard & Greene, 2013).

Definition of Terms Used

The following definitions are provided to create an understanding of the key words utilized throughout the project.

Adherence/Compliance: Adherence and compliance are the same in the patient-centered medical world. They represent “the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider” (World Health Organization, 2003, p. 18).

Informed Consent: Informed consent depends on how competent the patient is from a cognitive standpoint to make a “voluntary choice” regarding treatment and care based on information provided to them (Appelbaum, 2007, p. 1834). This also means that patients must be provided with a substantial amount of information to make their choice, which is known as the Reasonable Patient Standard, rather than going by provider preference or coercion (De Bord, 2014).

Paternalism: Paternalism is defined as the “power and authority one person or institution exercises over another in order to confer benefits on, or prevent harm to, that person, regardless of the person’s informed consent” (Habiba, 2000). In layman’s terms, paternalism exists when a physician or other health care practitioner (nurse, medical assistant, physical therapist, and others) decides upon a course of action without any real input from the patient.

Patient Activation/Engagement: Patient Activation or Engagement describes the extent to which a patient has “the knowledge, skills, and confidence” to manage and take part in their health care (Hibbard & Gilburt, 2014, p. 3). PAM gives a number on a scale of 0-100 with higher scores representing higher levels of activation (Hibbard & Gilburt, 2014, p. 8). When a patient is more activated, their overall health tends to be better. It can play a role in “tackling health inequalities” as well (Hibbard & Gilburt, 2014, p. 4). Throughout this project, patient activation and patient engagement will be utilized interchangeably.

Patient Activation Measure: The Patient Activation Measure (PAM) is a “series of 13 statements designed to assess the extent of a patient’s activation” that the patient completes on their own (Hibbard & Gilburt, 2014, p. 8).

Shared-Decision Making: Shared-Decision Making (SDM) is a process where healthcare providers and patients work together to reach the best conclusions regarding treatments and next courses of action (Elwyn, et al., 2012, p. 1361). Both parties must share information completely and freely to fully participate in the SDM process. SDM can range from a system where patients have slightly more control to those of truly shared decisions.

Strategy, Approaches, and Challenges of This Project

The research method utilized for this capstone is the case study. First, a search throughout peer-reviewed academic journals and other reliable sources was carried out using key terms. This approach allowed for specific research into how patient engagement has been studied. The focus was more retrospective research than prospective research. While some portions of this project will be exploratory for future research, it will mostly be focused on program effects. Heavy reliance on research via the internet and in resources available via libraries will be necessary.

While case study is the ideal method for researching this project due to the time given, it has presented limitations on what could be compiled and analyzed. The planned research was based on prior studies and findings of others in the field. Some research studies were limited in scope, especially since much of the current research recognizing the importance of the subject had been conducted by one major research group – Judith Hibbard and Jessica Greene. This may limit the information available for this case study.

Case studies can be difficult to evaluate. However, this capstone focused on a scholarly work accepted by academic standards. The theories and practices discussed in this capstone identified effective ways patient engagement can influence the industry at large. Bringing new ideas and perspectives to the discussions around engagement would be valuable. Additionally, lessons learned and ideas for future research are included.