Welcome to Introduction to Patient Engagement and Participation. This unit focuses on the development of the engaged or participatory patient, a role facilitated by emerging information availability and communication tools. At the conclusion of this unit, participants should be able to describe the spectrum of patient engagement and participation, explore some common manifestations of patient engagement and participation. Review the role of technology in facilitating patient engagement and participation, describe some of the barriers to patient engagement and participation. Describe some of the documented and proposed benefits of patient engagement and participation, describe some of the commonly raised concerns related to patient engagement and participation. Over the last several decades technology has changed many aspects of western society. Information that was costly and accessible only to experts is now widely and inexpensively available to anyone with an Internet connection. Communication tools are powerful, widespread and low cost. Social media provides easy access and real time sharing among large sectors of the population. The resulting democratization of information and communication has enabled increased autonomy and decentralization in nearly every aspect of 21st century life, including banking, education, travel, and shopping. This democratization has enabled the broad effort of person-centric care. In this component, we will be talking about the narrower patient-centered care because our focus is on persons already involved in the healthcare system, that focus has it's own characteristics and complexity. This unit will discuss how these technical and cultural changes have begun to impact healthcare, with a focus on the development of the engaged or participatory patient. The Institute of Medicine, IOM, defines patient-centered care, PCC, as quote, care that is respectful of and responsive to individual patient preferences, needs, and values, end quote. And then ensures, quote, that patient values guide all clinical decisions, end quote. As the definition implies, an important attribute of PCC is the active engagement of patients when healthcare decisions must be made. We recognize that this focus is narrower than the broader concept of person-centered. Our focus is on persons already involved in the healthcare system, that focus has its own characteristics and complexity. Topics important to the implementation of PCC include effective and efficient communication, shared decision making and support for patient needs. There is widespread consensus that the traditional methods used to pay healthcare providers tend to hinder their ability to deliver PCC by favoring volume over value. New and evolving delivery and payment models are expected to stimulate and sustain innovative approaches to the delivery of PCC in the future. Importantly, there is evidence that information technology can have multiple benefits for PCC by improving shared decision making, patient clinician communication, patient engagement, and patient access to medical information. Patients who voluntarily seek care or participate in healthcare activities are by definition engaged. The manifestations and degree of their engagement exist on a spectrum from traditional passive compliance with decision orders through varying degrees of participation. In collaboration on such things as goal setting and care plans, to driving decisions, using principles of co-design and co-production. Important factors contributing to the increase in patient engagement and participation include, the explosive growth in breadth, depth, and complexity of medical knowledge. And capability, which makes it impossible for the individual clinician or any clinical organization to remain current, support deep expertise in all areas, and provide the best available information and services. This is most apparent in the care of chronic diseases, such as diabetes, in settings of complex or serious co-morbidities. And in rare conditions that are becoming better understood and more treatable, with growing opportunities for positive outcomes. Because of the constantly changing nature of our best science, and the awareness of information and resources beyond those provided by their local clinician. The public no longer assumes that passive deference to professionals and experts insures that diagnosis or treatment will be based on the most current information of best practices or relieved predictably to optimal outcomes. The public increasingly aware of the existence of choices in medical care, the benefits of engagement and the right to share in information and decision making wants to co-design and approach that is tailored to them as an individual. There is no single behavior that defines patient engagement. The degree and manifestations of engagement and participation exist on a spectrum. And are as varied as the heterogeneity of patients, their healthcare issues, and their local care settings. Similarly, no single approach by clinicians or institutions will ensure successful patient engagement. Despite this, some common forms of engagement can be found along a continuum from seeking information through co-managing care, to managing medical systems. At one end of the spectrum are patients who utilize various techniques to improve their understanding of their health and healthcare issues. The majority of patients seek information about both acute concerns and chronic problems from a range of sources, including friends, family, print or broadcast media, or the Internet. They may do this prior to the visit and come in with questions or concerns, or after the visit to verify or supplement what they have been told during the visit. With new or acute problems, patients often seek information to try to do self-management and avoid the need for medical care, or to determine what kind of care is needed. They may come in with questions or with a tentative diagnosis or treatment. In the setting of complex or chronic problems, the time constraints of an office visit often make it impossible to cover all the information appropriate for the problem, or address all the patients questions and concerns. Studies have shown that about half of what patients are told during an office visit is forgotten immediately, and that half of what is remembered is remembered incorrectly. Engaged patients may take notes, request written or online information, bring a family member or friend to help by taking notes or asking questions, or wish to record part of all of the visit. Patients are increasingly aware that they are entitled to full access to their personal medical information, and may request a copy of the office visit notes and test results. In addition to education themselves about their health and health information, engaged patients may take an active role in the care process itself. This takes many forms, asking questions, requesting clarification or more information, or asking for additional opinions. Contributing to the office visit agenda in advance by communicating their concerns and questions or areas they wish they pursue. Collecting and tracking health the medical data, no longer limited to simple measures like weight, blood pressure, episodic blood sugars or peak flows. This now includes cardiac rhythm, anti-coagulation labs done at home, wirelessly transmitted continuous blood sugars in diabetes, and a host of data points from a growing set of wearable sensors. Expecting their patient generated health data to be incorporated into their health record and used for both monitoring and decision making. Transition from clinician-based to shared decision making, patients expect to be told what their options are and what the evidence is, and then be included as a partner, or the driver, in creating their individual diagnostic or treatment plan. As they become more aware and educated about their health conditions and have better access to their health data, patients are increasingly researching and suggesting possible diagnostic and treatment approaches. Patient engagement and participation are not limited to personal care. The public is becoming involved with institutional planning and policy making, prioritizing planning, and carrying out research, and participation in local, state, and national policy making bodies. Medical conferences are beginning to include patients as both attendees and presenters. Over the last two decades, research has shown that patient engagement and participation, as an active partner in care, yields important benefits. One well researched area is opening the clinical record to the patient. Whether studied in specific illness setting like Dr. CT Lynchburg with congestive heart failure or the OpenNotes project in the primary care setting. The documented benefits of patient access to the record have included. Enhance patient understanding of their illness and care plan. Increase patient adherence and follow through with diagnostic and treatment plans that are co-developed rather than dictated. And that reflect the patient's individual needs, personal values and preferences, safety, resulting from correction of errors. Fewer instances of lost information and improved communication. Improved outcomes, lower cost. Improved patient satisfaction, with both the process and outcomes of care. Improved clinician satisfaction as a result of shared responsibility for outcomes and happier patients, supports research, supports patient advocacy and self-care movements, The rate of innovation and diffusion or new technology makes it hard to assess and impossible to list all the tools and technologies that support the ability of patients to engage and participate in their own care. The most obvious tools and technologies make general health information available to the public. This includes electronic access to medical libraries, online knowledge bases such as MedlinePlus, and open journals such as PLOS, Public Library of Science. Many medical problems and diagnoses have vigorous online communities that monitor the relevant fields and accumulate curated libraries. Most large medical bodies now publish their recommendations not just to professionals but to the public at large. The United States Preventive Services Task Force USPSTF, the American College of Cardiology, and the American Cancer Society to name a few. Electronic communication using email, texting, blogs, and web-based messaging is allowing patients much greater access to the members of their healthcare team. Patient access to personal medical information is now protected by law, and a host of enabling technologies exist, with more in development. Most institutions provide a portal to allow patients to access some of their personal medical information. Many institutions use OpenNotes developed with a Robert Wood Johnson Foundation research grant to allow patients full access to their office notes. And a study is underway of an enhancement called Our Notes to let patients contribute to their own record. Individual clinicians without access to technology such as OpenNotes are giving patients copies of notes and test results. States have begun allowing laboratories to email test results directly to patients. There are patient-based personal health records which allow patients to collect and share their medical information. On the horizon are technologies that may allow patients to be the owners and stewards of their own medical record, allowing access to members of their clinical team. HIE of one. Social media and a wide range of patient communities provide support, education, and serve as access points for a depth and breadth of disease specific information not commonly available through doctor's offices. Patient generated data is growing in complexity and importance. Mobile and wearable devices and sensors allow patients to collect, analyze, use and share personal health data. Direct to consumer genomic testing is available and affordable. Patients are hacking devices such as implanted cardiac pacemakers or glucose monitors to get access to raw data which they use for personal care decisions. Computer simulations combined with gaming techniques referred to as serious games are being used to enhance patient education using real patient data. Despite recognition of it's value and a progressive increase in patient engagement over the last several decades, there remain barriers limiting the ability of patients to engage and participate in their care. The most obvious concerns are time and cost. Collaborative care with robust bi-directional information sharing and shared decision-making takes more time than the traditional model of a directive clinician managing a compliant patient. Spending more time with each patient in our current volume-based payment system means seeing fewer patients, providing fewer services, and generating less revenue. There are also cultural barriers to engagement, experienced by both clinicians and patients. The medical profession has a long history of classical professionalism. Sometimes described as eminence-based medicine, where the clinician is assumed to know best and is therefore expected to direct care for patients and families who are assumed to lack the ability to understand or contribute to the scientific process of care decisions. For patients, the combination of high levels of uncertainty, high stakes, lack of training in medical science, and unfamiliarity of medical language may lead patients to defer to the expert clinician for the right answer. Systemic barriers are also important. Volume-based payment, quality initiatives based on guidelines and metrics that put clinicians at risk for patient behavior and outcomes. And the relative absence of patients at all levels of policy making in medicine are all factors that tend to encourage physician and evidence directed care, and exclude the patient from engagement. Three concerns are consistently raised when considering increasing patient engagement and participation. Untrained patients and families are not equipped to understand or participate in a meaningful way in directing care. Untrained patients will be confused, upset and maybe harmed. Untrained patients will insist on inappropriate, costly or potentially dangerous testing or treatment. These concerns have not been borne out by multiple studies. OpenNotes for example, began as a several year study of about 20,000 patients and their primary care clinicians. At the conclusion of the study, both patients and clinicians overwhelming wish to continue using OpenNotes, and the process has now grown to include 5 million patients and is no longer limited to primary care, confusion, and harm have not occurred. This concludes the unit Introduction to Patient Engagement and Participation. In summary, as a result of technological advances in the information and communication, and broad societal changes, engaged patients who wish to participate actively in co-driving their care, are becoming more common. And if trends continue, will soon be the norm. The evidence currently available says that this will provide benefits in terms of improved safety and better and higher levels of both patient and clinician satisfaction. The commonly cited concerns about untrained patients being unable to participate meaningfully or being harmed have not been seen in studies. There remains substantial systemic and cultural barriers to patient engagement.
