Best Practice Guide for Sharing Hospital Information with Patients and Other Care Providers. HIMSS EIS Committee

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1 Best Practice Guide for Sharing Hospital Information with Patients and Other Care Providers HIMSS EIS Committee June 2012 Introduction We know that sharing data with our patients is a requirement of Meaningful Use; it is also the mantra in the move to patient-centered care. As organizations set out to redesign their care model, they are addressing the quality and cost of healthcare. The patient-centered care organization is focused on the overall health of its patients (including preventive health, health promotion and self-care), managing the health of its patient population with care teams working in collaboration with their patients. Perhaps the most important aspect of patient-centered care is the active engagement of patients in their health and healthcare. The engaged patient is continuously gaining knowledge, acquiring skills, and building self-confidence to take charge of managing their health. Engaging the patient in this transformational change requires a flow of information from a trusted source that is easily accessed, with the information needed to deal with a particular health problem available when and where it is needed. You want your organization to be that trusted source, building and enhancing the relationship with your patients. Health information technology (HIT) will be instrumental in providing the means to connect patients to their care teams and promoting the patientcentered healthcare organization. There are many aspects to consider with respect to sharing data with patients. There are concerns among healthcare providers that this will increase expectations that providers may not be able to meet. There are expectations that patients participate (Meaningful Use Guidelines) and there may be some very real issues that may inhibit their ability to do so. These issues are important to consider since they could directly affect your potential reimbursement or penalties from the government. To help you in this journey as you prepare to share data with patients, we have this Top 10 List of some best practices and ideas to consider as you transform your organization to a more patient-centered environment. Of course, entire books could be written about each of these topics. This discussion is by no means meant to be exhaustive, but if it serves as a starting point from which you can enter this challenging territory better equipped to succeed, then we, too, have succeeded in providing compelling information to assist you in this journey. 1

2 The Top 10 List: 1. Why Share Data with Patients 6. Culture & Socioeconomics 2. Myths & Reality 7. What Data Should be Shared 3. Engaging Patients in Design & Process 8. How Should We Share the Data 4. Governance 9. Sharing Data in a Secure Manner 5. Regional Readiness 10. Benefits of Sharing Data 1. Why Share Data with Patients Connecting the patient to their healthcare organization and particularly their care team is clearly a critical strategic imperative that should be integral to every organization s roadmap for transforming to a patient-centered model of care. Numerous market forces are driving the need to leverage health IT to engage patients. Two stand out because of their magnitude and sustained impact: Emergence of Accountable Care Organizations (ACOs): More than 100 ACOs are in the planning or operations stage today, with 500+ ACOs projected by With a patient-centered medical home as its nucleus, ACOs will need to effectively support population health management and proactive care before, during and after patient encounters. Population health outreach programs, alerts and reminders to patients, and self-management support are functions where interactive health communications is instrumental. Population health outreach involves detecting patients who are at risk of developing chronic medical problems and facilitating their visits with the health system for examination (e.g., with online notifications, appointment scheduling, etc.) For patients under active care, the ACOs providers need to monitor patients adherence to medications and care guidelines using longitudinal history from the EHR as well as medical history and diaries that may be provided by the patient. When possible problems are detected, patients could be notified with automated, personalized reminders and messages offering assistance made available via secure communications. Medicare & Medicaid EHR Incentive Program: Engaging patients and their families is a pillar of the criteria for healthcare professionals and hospitals to demonstrate meaningful use of electronic health records (EHRs). The emphasis on patient engagement in the EHR incentive program is a reflection of the significant importance that the country s largest payer of healthcare places on improving the quality of healthcare and reducing costs. The proposed Stage 2 Meaningful Use objectives and measures require patients to have the ability to view, download, and transmit information. Eligible professionals and hospitals must be able to send patients reminders for upcoming visits and have the infrastructure in place for patients and their care teams to communicate securely. 2. Myths & Reality There are many concerns voiced by hospitals, providers, and patients alike when discussing sharing data. Many of these are around security and privacy, while others are related to worries over the change in workflow, especially from the provider perspective. Here are a few myths and realities to keep in mind when planning your approach to sharing data with patients: 2

3 Myth: Sharing data with patients increases workload for clinical staff. Reality: In fact when patients are well equipped with the right information, there are several studies that show a decrease in the number of calls/ s from patients regarding the procedures before a hospital admission or follow-up care after the admission. Myth: When patient data is shared electronically, the privacy and security of the patient records is compromised. Reality: When a hospital needs to know about the patient allergy history or medication history from a primary care physician, the physician s office used to fax the entire patient record that they have on file, which could expose more sensitive data than what a patient wants to share with the hospital. In fact, when proper privacy and security practices are employed, electronic data sharing is more real-time and the amount of data shared is based on need. Myth: Too much information increases patient anxiety and contribute to unnecessary medical situations. Reality: With so much information available on the Internet today, patients might be getting data from unreliable sources. With hospitals providing the targeted materials to patients based on their condition, age and past medical history from trusted sources, this sharing can actually help the patient make knowledgeable decisions specific to their health. 3. Engaging Patients in Design & Process of Sharing Data One of the key factors in engaging patients in their healthcare is providing the opportunity to be involved in the design implementation of organizational systems and processes that support the practice. Organizational leaders are encouraged to outline key objectives in establishing a patientcentered environment as a part of the strategic planning process. These objectives include creating a patient-centered culture, developing the organizational structure to engage patients, as well as establishing patient support services. The following are components of an overall plan to effectively engage patients in the planning process. Organizational leaders are committed to creating a patient-centered environment and executive leadership should communicate the vision that patient engagement is a key success factor for the organization. o o Consider appointing a patient liaison to the Board of Directors and Executive Leadership Engage Medical Staff and Nursing Leadership in creating the organization design to support patient centered care practices Establish a patient-centered organizational culture o Align organizational policies and procedures to support patient-centeredness o Align organizational performance standards that adopt patient centered expectations o Provide staff education opportunities where patients and families can add value by providing understanding and knowledge from a patient perspective Establish a Patient and Family Advisory Council o Incorporate the overall Committee as a key leadership committee for the organization 3

4 o Appoint Council members to key organizational committees such as: Electronic Health Record Committee, Quality Committee, Education Committee, Patient Education Committee, Process Excellence, Patient Portal workgroup, and other Client Service work groups o Encourage patient involvement in system design for health IT solutions such as patient portals including establishment of priorities, providing feedback on usability and deployment strategies Deploy a variety of methods to engage patients and encourage connection with your facilities by establishing a mechanism to incorporate patient recommendations into organization action planning o Health IT solutions/patient portal Incorporate design recommendations into patient portal Develop surveys to solicit patient input into design based upon high impact and priority Seek advice on areas where patient and family autonomy in design is important o o o o Utilize social media to connect and communicate with patients Establish a communication plan that supports multiple methods of communications with patients regarding system changes that directly impact their ability to access information Establish ongoing support services to facilitate answering patient and family questions and resolve issues with adoption Establish a mechanism to measure the effectiveness of a patient portal with a proven measurement tool (e.g., the patient activation measure) Organizations that have engaged patients in the overall design of system processes have been rewarded by a higher level of patient satisfaction. 4. Governance It is critical to have a governance structure to ensure that the perspective of the broader healthcare community is represented and so the data is established to be a credible and trusted source of information for patients, caregivers, and providers. Recommendations for governing the information should include balancing patients rights to data protection and confidentiality against the need to promote public health, and so not to conflict with patient privacy. Patients have concerns about the privacy and security of their health data, but are comfortable with the idea of having their information shared with healthcare providers and professionals. PwC Health Research Institute completed an online survey of 1,000 consumers, and when asked to select the purposes for which they would be comfortable having their health data shared among healthcare organizations, 60% said for improving coordination of their care; 54% said for supporting real-time decisions in their care; 36% said to support analysis of physicians performance; and 29% said to provide data to identify groups or patients at risk for health issues. An effective governance strategy will also have to take into account all of the internal issues that arise, either directly or indirectly, from data sharing. Each of the topics discussed in this paper is a component 4

5 that must be managed. Before creating a separate governance process for data sharing with patients, investigate whether or not your current governance practices could adequately cover these issues. They may require modification in order to do so, or you may discover that a separate process works for your organization. Whatever your chosen solution, some basics apply here as elsewhere: Start early Be inclusive by design Remain flexible Accept change as a constant 5. Regional Readiness Sharing data with patients can be adversely affected by various environmental factors, such as the area or region they reside in and their access to adequate connectivity. For example, the rural health community can benefit from the use of information technology to transform clinical practice, but faces unique planning and implementation opportunities. The Office of the National Coordinator for Health Information Technology (ONC) identified three major challenges impacting the rural health community: Lack of financial capital A shortage in skilled personnel Access to affordable broadband and wireless infrastructure ONC also highlighted the USDA and HHS agreement to help expand the infrastructure in Rural America at There were two key programs developed out of this Memorandum of Understanding to continue to expand health IT infrastructure in rural areas. They include a community facilities program (that provides guaranteed loans and grants for projects in rural areas) and a distance learning and telemedicine grant program (that will assist in bringing telemedicine services to rural communities). These programs may help to offset the costs of EHRs and the ability of rural areas to provide data sharing with their patients. 6. Culture & Socioeconomics It is important to consider how culture and socioeconomics can impact the level of success in which hospitals and healthcare systems share data with both the provider and the patient. The following can affect the success of reaching the provider as well as the patient: Race and ethnicity Disabilities Inadequate technological resources Socioeconomic status Age 5

6 Language Literacy level Hospitals and health systems need to understand and consider the provider s ability to have the resources necessary for receiving the data as well as accessing information through portals, , EHRs, etc. Those providers in single practitioner offices, rural areas, and without insurance are at risk of not having the ability to access and use hospital provided data. This creates a potential gap in the quality of care they can provide their patients compared to providers who have the resources to obtain and utilize hospital data. The American Reinvestment and Recovery Act (ARRA) addresses that through the Meaningful Use Incentive Program so that under-resourced providers may receive financial assistance if they demonstrate adoption and meaningful use of EHRs. Technologies used to provide patients and consumers with access to health information are used less among the elderly, minorities, the physically disabled, and those with lower incomes. These groups are already at risk for not having the appropriate access to care and having lower health quality. Unfortunately, these groups typically have more chronic conditions and are in higher need of the care. The Agency for Healthcare Research and Quality (AHRQ) and ONC are both working to address these concerns through policy and practice. Creating the framework to reach these populations includes both technological and meaningful functional requirements. Both the provider and the patient s access to healthcare and information through technology is more likely to be successful if they are able to meet these requirements: Having a reason to use the technology An understanding on how to use the tools Having the capability to address issues with the technology Having access via broadband Internet and/or having a smart phone data plan Having a PC or smart phone There also needs to be meaningful functional requirements to show the value of accessing the data to include: The desire for the data Knowing the information and data exists Ability to find the data, read the data, and understand the data Seeing the value of the data, believing it is worthwhile information Consider, too, that patients and communities may vary in their access to and use of technology, general and medical literacy, and other factors. The differences can be striking. For example, one may be technologically savvy, own a computer and a smart phone and be adept at surfing the web, while another may read at an elementary level and does not use a smart phone data plan nor own a computer. Both of these patients own a smart phone; however, they are very different in their comfort level and understanding of technology, affecting their ability to utilize and understand their medical data 6

7 that has been shared. This example demonstrates the need to review cultures and socio-economic status of your populations when considering how to share data with patients. 7. What Data Should be Shared Data sharing between patients and providers (hospitals, physicians, care teams) is a two way street and should be bi-directional. It promotes a means to stay connected, engaging both parties in the patient s care. Building the relationship between patient and hospital/provider requires on-going communication. As patients become more educated and learn more about their health, they will expect to play an integral role in their care and in order to do so, they will want to be able to use technology to do many of the following with their hospital/provider: Registration Provide demographic data Provide their medical history & PCP referrals Provide specific symptoms and data about their condition Provide insurance information and understand eligibility Request/schedule an appointment Request to see a provider or have a procedure done Change or cancel an appointment Retrieve/view past, current and future appointments Review/receive lab results Review/receive a patient care summary (including key items such as their medication list, problem list, allergies, discharge summaries, test results and procedural information) Review/receive radiology results Receive alerts/reminders for upcoming appointments, procedures, checkups & follow-up visits Two-way communication between patient and hospital/provider/care team Discussions regarding issues or questions such as medication information/concerns, symptoms, procedures Review/receive general health data such as medication facts, lifestyle information, test facts, procedural information Review/receive education programs, tutorials, videos Obtain/request information such as a copy of the patient chart, prescription refills, immunization records Hospitals and providers also want to promote amenities and special services for patients such as: Access to benefits information Online access to bill information and online bill pay Access to children s immunization records Online check in Provider directory Targeted content related to disease states 7

8 evisits Provide PCP/providers with results and pertinent patient information Personalized medicine by providing patient with health management tools to track disease/symptoms, medications and home testing with ability to report back to the provider/hospital 8. How Should We Share the Data Data sharing between patients and providers (hospitals, physicians and care teams) is a requirement to meet Meaningful Use. Stage One required that upon request, the hospital must provide the patient with an electronic copy of his or her health information, including such data as test results, problem lists, medication lists, medication allergies, discharge summaries and procedures. There was no specific requirement, however, as to how to deliver this electronic copy. There was also a requirement regarding summary of care to providers and for EPs, to send reminders to patients for follow up care based on patient preferences. In Meaningful Use Stage Two proposed guidelines, however, there are stricter guidelines and deadlines to providing this data. There is also a change in the Stage One guideline requiring that hospitals provide patients with the ability to view this data online, that they be able to download it and also transmit their health information (to another provider for example), that the hospital provide this to greater than 50% of their patients and that greater than 10% of their patients utilize this functionality. Though this change does not mandate a certain method to be used for patient data delivery or access, the need for technology is evident. Without a way to provide online access to this data, hospitals and providers may find it extremely difficult to meet Stage Two requirements. Web portals are at the forefront of the technology for hospitals and providers to deliver information to patients because: Portals meet the need of organizations to deliver an online care delivery system and promote a personalized care system between hospital/provider and patient Portals can provide the necessary access methods and security to meet PHI/HIPAA requirements Portals can provide integration into EHRs and many EHRs provide their own patient portals Portals can provide the opt in/opt out mechanisms and business rules to meet compliance and regulatory requirements Portals can establish a user profile and manage patient preferences Portals can provide the mechanism for secure communications between hospital/provider and patient Portals can provide alerts and reminders Portals can integrate technically and securely with various modalities such as pagers, smart phones, automated phone systems and other mobile devices to deliver messages securely PHRs (personal health records) are a technology that can assist patients and hospitals/providers as well: 8

9 PHRs allow patients and physicians access to online patient information at the time it is needed to assist in making care decisions PHRs provide a place/means for patients to track their issues/concerns/symptoms PHRs provide a place/means for patients to manage their own information around medications, allergies, problems, as well as maintain a medical history Secure is another method that can assist organizations in meeting these guidelines, though it is more limited in its ability to provide enough information and storage of that information for future use. This technology does not lend itself to promoting results and patient care summaries, for example. Social media can and is used somewhat, such as Twitter and Facebook. Most organizations that are utilizing these technologies are doing so in a more general fashion with patients, rather than on an individual basis. Making these secure for individualized patient communications would require extending those functionalities further and enhancing the method of communicating in order to promote patient privacy. The Meaningful Use guidelines and criteria are promoting patient/family involvement in their healthcare, moving to a more patient-centered model. Through portals and PHRs, technology can deliver access to data as needed, but another very real goal is to promote interoperability and the exchange of information. Providing a better view of the patient in order to coordinate their care will provide the biggest benefit to the consumer. Success should be measured by seeing better patient outcomes, higher quality of care and decreased cost rather than just having organizations meet the Meaningful Use guidelines. In order to promote and maintain these successes, we will need to create the tools that will allow clinicians to change the way they do their work, enhancing communication between patients and all caregivers. 9. Benefits of Sharing the Data As we grow the tools and ability to share data from hospitals and healthcare systems, we are seeing benefits realized by both the provider and the patient. Having access to healthcare information has improved the ability for providers to treat their patients and provide higher quality healthcare. It is also evident the patient benefits from access to the pertinent information needed to improve and manage their health. Some benefits patients realize include: Patients become more involved in their healthcare and pay more attention to their personal health Patients are becoming more compliant with preventive screenings and immunizations Patient are working directly with their provider on care plans Patients are becoming more knowledgeable about healthcare in general Patients and their providers/physicians have enhanced communications with the access to online chats as well as through secure communications Teens and parents have enhanced their communications on healthcare concerns 9

10 Providers and hospitals are finding many benefits from sharing data with patients, especially from an online/portal mechanism: Gathering the pertinent health information on the patient prior to a visit Establishing and enhancing the patient/physician/hospital relationship Gaining a competitive edge by branding and raising awareness Decreasing teaching time or educational needs of the patient Meeting their mission and vision Meeting Meaningful Use guidelines by providing timely delivery of information Reducing costs by leveraging personalized and private interactive communications Reducing costs by decreasing duplication of tests Gaining efficiencies by saving time gathering patient information, providing patient information and answering phone calls Promoting a patient centric medical home model 10. Exchanging Data with Patients in a Secure Manner More than ever before, patients are informed about their healthcare options and expect to participate in their care. They increasingly expect to be able to exchange electronic information with their healthcare providers and receive information from their trusted partners and hospitals. As a result, providers in particular are seeking to respond to these expectations and improve patient services. At the same time, they must meet HIPAA, ARRA/HITECH and, optionally, Meaningful Use requirements for securing patient data and data exchange. Ultimately, providers and hospitals are responsible for ensuring the privacy and security of patient information, including that which they send to the patient. Studies show that patients trust their primary care providers the most. It stands to reason, then, that the provider-patient relationship is the foundation for trust in any form of health information exchange. In order to address privacy and facilitate trust, ONC offers the following key privacy principles relating to electronic patient data: Individual Choice: Consumers should be empowered to make decisions about with whom, when, and how their personal health information is shared (or not shared). Collection, Use, and Disclosure Limitation: It is important to limit the collection, use and disclosure of personal health information to the extent necessary to accomplish a specified purpose. The ability to collect and analyze healthcare data as part of a public good serves the American people and it should be encouraged. But every precaution must be taken to ensure that this personal health information is secured, de-identified when appropriate, limited in scope and protected wherever possible. Data Integrity: Those who hold records must take reasonable steps to ensure that information is accurate and up-to-date and has not been altered or destroyed in an unauthorized manner. This principle is tightly linked to the correction principle. A process must exist in which, if 10

11 consumers perceive a part of their record is inaccurate, they can notify their provider. Of course the HIPAA Privacy Rule provides consumers that right, but this principle should be applied even where the information is not covered by the Rule. Safeguards: Personal identifiable health information should be protected with reasonable administrative, technical, and physical safeguards to ensure its confidentiality, integrity, and availability and to prevent unauthorized or inappropriate access, use, or disclosure. Accountability: Compliance with these principles is strongly encouraged so that our systems can realize the benefit of electronic health information exchange. Those who break rules and put consumers personal health information at risk must not be tolerated. Consumers need to be confident that violators will be held accountable. There are also security implications for many of our common communication mechanisms: Secure A recent study shows that is a common preference for patients when it comes to communications with their care providers. While useful for administrative areas (for example, appointments and billing inquiries) it is not the best method for communication of clinical results or care summaries. The study also cites privacy and security, time constraints, and lack of compensation as barriers to its use by providers. must be stored and transmitted securely and, for security and legal reasons, it also requires audit and tracking capability. This can mean a complex implementation challenge for providers. Secure messaging (EHR): The Meaningful Use Stage Two measures call for implementation of secure messaging with patients as an embedded EHR function. The ONC EHR Certification program requires EHRs to provide this capability in their products as part of the 2014 EHR Certification requirements. This method is not in widespread use at this point in time. Secure messaging (other): There are many third-party secure messaging applications available on the market today. Secure messages are bi-directionally encrypted and are stored on a network or Internet server. While this represents a secure solution, this method is not in widespread use at this point in time, by providers or patients. Common text messaging applications, such as those available on cell/smart phones, do not represent secure applications and should not be used with patients, unless augmented with security controls. Web Portals: Patient-centered IT solutions, such as web portals, can provide patients instant access to information without direct involvement from the provider/staff. Web portals can be accessed by patients through desktop computers, laptops, smart phones, and other mobile devices to allow convenient and secure access. While security is always a requirement, most web portal solutions are provided by third-party vendors and contain robust features, such as user access control and authentication, audit trails, encryption, and even features that capture user privacy preferences such as opt-in/opt-out selection. Social Media: Social media applications, such as Facebook, Twitter, and blogs, are occasionally used by providers, in particular, by hospitals. Most organizations that use these applications use them to communicate to a patient constituency/group as opposed to individual patients. The purpose is more to engage and educate rather than to utilize these mechanisms for individual patient data sharing. Security is a concern because these applications have little to no security features. The privacy aspect can be challenging and organizations should educate provider personnel on what to do and what not to do, in order to steer clear of legal and/or ethical violations. For instance: 11

12 Do NOT diagnose or treat using social media Do NOT discuss individual patient s illnesses, medical conditions, or personal information online Do NOT share confidential information about patients or the organization Do NOT give clinical/treatment advice or diagnosis In summary, there are many approaches you can take to sharing data with patients. It has become apparent with Meaningful Use guidelines that a technology solution is going to be necessary to meet these criteria. Providers, hospitals and health systems need to determine the solution and approach that will be effective in their region and with their customers. It is essential to remember the patient is at the center of this experience, so utilizing patient input may be critical to your success as well as in building that patient/provider relationship. Contributors Marilyn Goodloe MBA, CPHIMS, HIMSS Senior Director of Information Systems Memorial Health System Colorado Springs, CO Kalyani Yerra MBA, MHA, PMP, CPHIMS Senior Staff Software Engineer Siemens Health Care Shelley DiGiacomo, RN, MSN, CPHIMS Vice President Consulting Services Quammen Health Care Consultants Judy McCarthy, RN, MSCIS, CPHIMS, FHIMSS Chief Technology Director National Jewish Health Denver Colorado Sarah Sample-Reif Account Executive (AE3) Healthcare Technology Division Kforce Professional Staffing Lisa Gallagher Senior Director, Privacy & Security HIMSS 12

13 Resources Used Health Research Institute Putting Patients into Meaningful Use Paper developed by Tim Kiescnick and Brian Raymond for the roundtable sponsored by The Agency for Healthcare Research and Quality, AMLA, and the Kaiser Permanente Institute for Health Policy. Emont, S. (2011). Measuring the impact of patient portals: What the literature tells us. California Healthcare Foundation. Raths, David (2009) Helping Patients Help Themselves The Benefits of Using Patient Portals. Lead IT 2009 Vol 11:39 Roop, E.S. (2011, May). Making a connection: Patient portals deliver convenience, efficiency, and engagement. For The Record, 23(10), The Office of the National Coordinator for Health Information Technology (ONC) Regional Extension Centers Federal Communications Commission Rural Health Care Program Health Resources and Services Administration Office of Rural Health Policy (ORHP) Rural Assistance Center National Rural Health Association National Rural Health Association Policy Institute Rural Health IT Adoption Toolkit 13

14 Rural Health Care Conference by American Hospital Association s Health Forum 14