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Patient Centered Care | Unit 1 Lecture
- 1. Patient-Centered Care Introduction to Patient Engagement & Participation This material (Comp 25 Unit 1) was developed by Johns Hopkins University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0005. This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/.
- 2. Introduction to Patient Engagement & Participation Objectives • 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. 2
- 3. Introduction Social and technological changes over the last decades have ‘democratized’ information and lowered barriers to communication, fostering decentralization and autonomy in many areas, including health care. 3
- 4. Patient- versus Person-Centered Care The Institute of Medicine (IOM) defines patient-centered care (PCC) as: “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions.” 4
- 5. Definition of Patient Engagement • Patients (including family members or caregivers) who seek care or actively participate in managing and/or executing their care are “engaged” patients. • Ideals of the Patient Engagement movement: – All Patients are active drivers of their own health – All Providers encourage and value Patients as full partners 5
- 6. Drivers of Patient Engagement Explosive growth in medicine’s complexity and capability: – Increasingly difficult for individual clinicians or centers to maintain broad and deep expertise or provide best available information and therapies – Increasing public awareness that passive deference does not produce reliable outcomes Advances in technology – Increasing ease for public to access medical knowledge & expertise, peer experience Cultural change • People increasingly interested in autonomy 6
- 7. Manifestations of Engagement • There is no single behavior that defines engagement 7
- 8. Manifestations of Engagement Spectrum of Behaviors Engagement takes various forms along a spectrum of behaviors: Co-production of care plan Co-design of broader healthcare systems/initiatives 8 Delegation of all decisions to medical professionals Focused on compliance with doctors’ orders
- 9. Manifestations: Information- Seeking Patients may seek information about acute or chronic issues by: – Asking friends & family – Accessing online resources (e.g. information databases, open journals) – Joining support groups (in-person or online) – Asking clinicians (i.e. brining and agenda/questions to encounters) – Obtaining medical records (e.g. clinic notes, test results, study images) Common purposes of information-seeking: – Enable self-management – Avoid need for medical care or admission – Determine appropriate type of care – Supplement limited time during office visit – Memory aid 9
- 10. Manifestations: Contribution to Care Patients may seek an active role in the care process itself by: – Asking questions to better understand or challenge – Setting goals of care and agenda for visits – Collecting, tracking, reporting facts or data – Expecting shared decision making – Offering observations, information, theories, or actions to affect the treatment plan – Effort outside of clinical settings to pursue goals 10
- 11. Manifestations: Systemic Engagement Patients may seek to affect healthcare more broadly than their case: – Initiating/supporting research – Advocacy in public policy – Involvement in institutional planning/design – Joining/supporting non-profit organizations – Participation in healthcare education & conferences 11
- 12. Benefits of Engagement - 1 • Enhanced patient understanding of illness and plan • Enhanced patient adherence to collaborative plan (different model from ‘compliance’ with clinician ‘orders’) • Improved safety • Improved outcomes • Lower cost Delbanco et al, 2012. 12
- 13. Benefits of Engagement - 2 • Better patient experience – Therapeutic benefit from contributing to care (vs. being subjected to it) – More constructive interactions w/ clinicians – Validated in Ownership in outcome • Better clinician experience – Partially relieves burden of having sole responsibility for improving patient health • Supports some types of research (e.g. epigenome-wide association studies (EWAS), open artificial pancreas system (#OpenAPS)) • Supports some current movements (e.g. Precision Medicine, Person- and Family-Centered Care) Greene, Hibbard, Sacks, Overton, & Parrotta, 2015. 13
- 14. Role of Tools and Technology Explosive growth in enabling technology-based factors, examples: – Online knowledge bases (e.g. MedlinePlus, open journals) o Enables self-education – Electronic communication w/ clinicians (e.g. email, telemedicine) o Broadens access to technical expertise – Online communication w/ peers (e.g. support groups) o Resource for accessing experiences and ideas, receiving support – Online patient portals & electronic medical records o Makes detail of case visible, mobile, portable – Mobile Devices & Applications o Generates useful data outside of clinical settings 14
- 15. Perceived Barriers to Patient Engagement • Clinicians’ time constraints • Cost: volume-based pressures and incentives • Inaccessibility of clinical language • Cultural conflicts – Professional norms of eminence-based interactions and classical professionalism versus collaboration and shared decision making – Public norms of reliance on experts to provide the right answers • Systemic pressures drive adherence to standard protocols 15
- 16. Concerns about Patient Engagement Common concerns: – Untrained consumers are not equipped for meaningful participation – Engagement may lead to confusion, distress, and even harm to patients – Engagement may drive up costs or harm due to unnecessary tests/interventions These have not been borne out when studied Delbanco et al, 2012. 16
- 17. Introduction to Patient Engagement & Participation Summary • Ideals of Patient Engagement & Participation: – Co-Production & Co-Design as norms across healthcare • Strong momentum toward Patient Engagement – Likely driven by advances in medicine & technology – Broad and varied manifestations across individual cases and larger systems • Evidence of significant benefits from Patient Engagement – Commonly cited concerns have not borne out • Significant cultural & systemic obstacles exist to further progress 17
- 18. Introduction to Patient Engagement & Participation References References Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, et al. Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Intern Med [Internet]. 2012 Oct 2;157(7):461–70. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23027317 Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA. 2002 May 22-29;287(20):2691-700. Review. PubMed PMID: 12020305. Greene J, Hibbard JH, Sacks R, Overton V, Parrotta CD. When patient activation levels change, health outcomes and costs change, too. Health Aff (Millwood). 2015 Mar;34(3):431-7. James JT. A new, evidence-based estimate of patient harms associated with hospital care. J Patient Saf. 2013 Sep;9(3):122-8. doi: 10.1097/PTS.0b013e3182948a69. Review. PubMed PMID: 23860193. Wright E, Darer J, Tang X, Thompson J, Tusing L, Fossa A, Delbanco T, Ngo L, Walker J. Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study. J Med Internet Res. 2015 Oct 8;17(10):e226. doi: 10.2196/jmir.4872. PubMed PMID: 26449757; PubMed Central PMCID: PMC4642386. 18
- 19. Introduction to Patient Engagement & Participation This material (Comp 25 Unit 1) was developed by Johns Hopkins University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0005. 19
Hinweis der Redaktion
- Welcome to Introduction to Patient Engagement & 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 its own characteristics and complexity. This unit will discuss how these technical and cultural changes have begun to impact health care, with a focus on the development of the engaged or participatory patient.
- The Institute of Medicine (IOM) defines patient-centered care (PCC) as: “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions.” As the definition implies, an important attribute of PCC is the active engagement of patients when health care 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 health care 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 health care activities are, by definition, engaged. The manifestations and degree of their engagement exist on a spectrum from traditional passive compliance with physician orders, through varying degrees of participation and 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 ensures that diagnosis or treatment will be based on the most current information and best practices, or will lead 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 an 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 health care 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 health care 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 patient’s 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 or 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 educating 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 to pursue. Collecting and tracking health and medical data. No longer limited to simple measures like weight, blood pressure, episodic blood sugars, or peak flows, this now includes cardiac rhythm, anticoagulation 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 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 settings like Dr. CT Lin’s work with congestive heart failure or the OpenNotes project in the primary care setting, the documented benefits of patient access to the record have included: Enhanced patient understanding of their illness and care plan. Increased 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 Medline Plus 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 health care 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 OurNotes 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 its 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 bidirectional 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 with 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 may be 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 overwhelmingly wished to continue using open notes, 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 & Participation. In summary: As a result of technological advances in 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 remain substantial systemic and cultural barriers to patient engagement.
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