By Julie Wolter, MA, RHIA, FAHIMA; Marsha Dolan, MBA, RHIA, FAHIMA; and Julie Dooling, RHIT
PHRs and patient portals can provide much needed links to health information in times of catastrophe
When a disaster hits, the impact is vast and devastating for victims and their loved ones. This point was driven home in 2011, when the Federal Emergency Management Agency (FEMA) reported 99 major disaster declarations, and the National Oceanic and Atmospheric Administration (NOAA) reported a total of 1,096 fatalities from a variety of weather events.
Disasters arrive in various forms and often occur without warning. As healthcare consumers, we must actively plan to protect ourselves, our family members, and loved ones. As HIM professionals, we must plan for anticipated threats and unexpected loss of protected health information (PHI) in our place of work and our communities.
Disasters Appear in Many Forms
Disaster threats can be categorized as acts of nature or humans. Natural disasters include earthquakes, tornadoes, floods, fires, hurricanes, or an infectious disease outbreak. The latter could be especially important for HIM professionals. Although it is outside of a weather-related scenario, an outbreak of disease could still require hospitals and facilities to implement disaster protocols and even seek external assistance to handle a potential influx of facility patients and visitors.
Disastrous acts initiated by humans can be broken down into two categories: intentional and unintentional. Intentional manmade disasters include theft, civil unrest-such as rioting and looting-terrorism, and malicious digital action-such as computer viruses, worms, and hacking. Unintentional manmade disasters include transportation accidents-like a plane crash-or chemical contamination-which can happen when toxins are spilled or improperly handled.
Another unintentional disaster specific to a healthcare facility is a medical error or omission. This type of error might start as just a simple mistake, but can quickly turn to disaster.
Flooding or fire due to a faulty mechanical system can wreak havoc on a hospital and its paper and electronic systems. It is vital that proper measures are taken to preserve and protect the health record in any form, and from any disaster type.
Personal Patient Records at the Ready
Regardless of the disaster type, most people evacuate a dangerous environment without any record of the medical treatments they have received, or any data regarding medications.
But patients need to be aware that in the event of a disaster, health records maintained solely by their providers could be compromised. During Hurricane Katrina more than one million paper-based medical records were destroyed. In the chaos of the California state wildfires of 2008 and the outbreak of the H1N1 virus, medical personnel had to rely on the memory of patients, family members, and friends to recall complex plans for medical care.
The ability to exchange medical information during an emergency is essential to improving the emergency response for everyone. HIM professionals need to be prepared to assist with the release and transfer of medical records when a disaster strikes in their area. But sometimes the disaster is so widespread that nearby facilities are also affected.
Because of this uncertainty, the consumer needs to be prepared when a disaster strikes. One way is to adopt an electronic personal health record (PHR) to organize patient health history and document health conditions, medications, provider names, contact information, medical history, and special needs.
HIM professionals can provide much-needed information to consumers for PHRs before disaster strikes. Consumers need to know how to develop and maintain a PHR and the advantages of patient portals. Both tools help facilitate the gathering of a consumer’s medical information and will be invaluable in the case of disaster.
The PHR is an electronic, lifelong resource of health information used by individuals to make health decisions. In a PHR, patients own and manage their health information, which is either entered through direct input by the patient and their authorized advocates or sent from the healthcare provider’s EHR. In times of disaster, the information is more likely to be recovered and retrieved through electronic means than if the information was stored on paper in a single location.
The PHR is maintained in a secure and private environment with the individual determining right of access, and it does not replace the legal health record maintained by providers. But it can be a good backup for patients should the original health record become unavailable or destroyed.
Five Personal Disaster Planning Questions
One shouldn’t wait for a disaster to occur before building an emergency plan.
“Planning is bringing the future into the present so that you can do something about it now,” says Alan Lakein, a well-known author on personal time management.
Life and HIM work are about planning for the unexpected, and knowing how to recover from those events that just “happen.”
HIM professionals need to prepare in order to survive a disaster, and creating a disaster plan for the family home or workplace is critical in helping prevent panic and potential tragedy. Developing a family plan is a good place to start.
Can your family answer these questions?
1. Do you have a family emergency plan for bad weather, fire, and other emergencies?
Have you evaluated your family’s risk for certain disasters? Some families do not need to worry about hurricanes but must be prepared for tornadoes. Depending on the potential disaster, you might need to be prepared to either stay in your home or leave and take shelter elsewhere.
2. Does your family have emergency supplies on hand?
At least a three-day supply of bottled water and non-perishable, low- or no-salt food items need to be packed and stored in a safe place for an emergency. Also, keep a small camping kit that includes some utensils, a can opener, and a small portable grill or burner. Some clothing and shelter items such as blankets, sleeping bags, and a tent should be kept in a secure, tightly sealed container. Essential items such as a flashlight, batteries, radio, toilet paper, moist towelettes, first-aid kit, matches, and car jumper cables should be considered when putting together emergency supplies.
Shoes and one change of clothing are also essential. Consider including pictures of all family members, including pets, in your supplies in case you get separated. Having current, easily transportable medications at hand is very important when planning for an emergency. Don’t forget to keep a suitable amount of cash on hand and copies of bank account numbers, credit cards, driver’s license, insurance cards, and other ID cards.
3. Do you have a designated safe area in your home or neighborhood?
Have your family designate a safe area in the home and one someplace else in the neighborhood or community. Depending on the emergency, make sure you know how the room in the home could be sealed. If the emergency is one that requires evacuation from the home, work with family members to draw out an escape plan that includes shutting off the utilities when allowed time.
4. Do you all know what to do in case of an emergency?
The pre-emergency plan discussed with the family is key to knowing where to go, what to do, and each family member’s responsibility during an emergency. For instance, who is going to grab the family pet and any medications or other information about the pet? During family planning, check with schools and churches for their emergency plans to determine where you might be able to meet if an emergency occurs when you are not together. Make sure schools have up-to-date contact information for a child’s parents and guardians.
5. Are there special needs in your family?
In every family a wide variety of special needs may exist and might include problems going up and down steps, respiratory and breathing problems, special equipment requiring batteries, and specialized medications. Make sure a list of medications, including dosages, allergies, and serial numbers on medical devices are always available, as well as a list of emergency contacts that includes providers’ names, phone numbers, and the contact information of close friends that can help with special needs.
Patient Portals Offer Remote Emergency Access
Patient portals can also aid consumers in their disaster planning. Portals offer secure, online, and remote access to select health information that is created and maintained in a facility’s EHR, then pushed to the portal for access. These systems not only interface with the EHR, but are capable of communicating via the continuity of care record (CCD) standard.
Patient portals serve as a secure communication link between consumers and providers. The expertise of the HIM professional can guide a consumer in the use of the portal and the best route to access their information in case of an emergency.
Patient portals are gaining attention this year since stage 2 of the government’s “meaningful use” EHR Incentive Program includes a core objective calling for participating providers to allow patients the ability to view online, download, and transmit their health information. Many plan to achieve this measure by implementing and using a patient portal.
HIM professionals should encourage consumers to utilize a patient portal, if offered through their healthcare organization, and provide education on its benefits. The portal gives patients easy access to their health information, which they can store in a PHR or retrieve online from afar if a disaster displaces them from home.
While technology varies, portals generally give consumers the ability to:
- Enter medical history online
- Send messages to their provider
- Complete new patient registration and patient pre-registration prior to visit
- Review and update medication lists, allergy lists, and problem lists
- Refill prescriptions
- Check lab results
- Schedule appointments
- Receive preventative health reminders
- Obtain patient education materials
- Pay bills online
- Interact with providers when it is convenient
- Reduce paperwork and give providers pre-collection of information
- Reduce phone calls
- Access information 24/7
- Act as an authorized representative by accessing a child’s information
- Act as a caregiver or an appointed legal guardian and access an elderly patient’s healthcare information
Providers and HIM professionals should also educate consumers about the advantages of patient portals and emphasize their usefulness in times of disaster. By shifting non-urgent communications from the telephone, ground mail, and in-person methods to the Internet, practices have seen improved efficiencies, reduced operating costs, and increased patient satisfaction.
Consumers should maintain a personal health record because:
- A PHR gives the patient the ability to provide doctors with useful health information about themselves (current medications, family history, allergies, current conditions, etc.)
- It provides the ability to look back and recall what healthcare a patient received
- It allows the patient to monitor the results of their treatment
- It gives the patient the ability to track their healthcare history so they can be an active participant in their care
- It allows the patient to be knowledgeable about their healthcare issues
- It allows for effective communication with providers
HIM a Natural Patient Advocate
HIM professionals need to be prepared to work with consumers in their development of a PHR or patient portal. Some ways to help include:
- Advocate the use of EHRs for all patients
- Educate consumers about the importance of creating and maintaining a PHR
- Work with component state associations, and regional and local associations to provide education to consumers about the ways portals and PHRs help in times of disaster
HIM professionals have been at the forefront of the PHR movement for years. HIM professionals have also moved into roles developing and maintaining patient portals. They are advocates for consumer privacy, particularly in the management and use of consumer information, and are advocates for the patient’s right to access their own records.
HIM professionals have the knowledge and experience necessary to educate the public about the correct methods for maintaining health records and should help consumers get the needed data to start and maintain PHRs or access a portal. Included in this help is explaining the different sources of information data and how they are used.
When managing a PHR or patient portal, HIM professionals should:
- Ensure healthcare facilities do not create barriers for patients who want to obtain their own health information; a lack of barriers is especially critical in times of a disaster
- Plan how PHR/patient portal information will be incorporated, stored, and maintained within the facility’s EHR
- Advocate for HIM professionals to fill job roles that oversee patient portal interaction and patient access issues
- Be able to explain how the information can be used by individuals and their physicians, and how the information can be used by others (i.e., encourage patients to review the notice of privacy practices document)
- Understand the role, function, and information requirements for the PHR and patient portal; understand how secure portal access is achieved, as well as maintenance and workflow practices
- Learn and educate others in the healthcare community about the usage of PHRs and patient portals in relationship to health information exchanges, accountable care organizations, and the Nationwide Health Information Network
Prepare for Disasters Now
HIM professionals have skills that enable them to help their facility or providers in a time of difficulty or disaster. These skills allow them to organize and manage information and data, and help plan for ways in which patients will be cared for in a crisis situation. The same skills that an organization will depend on when faced with a disaster will also help a family prepare for a disaster.
HIM professionals understand the need for preparation and have usually undergone special disaster preparedness training within their facilities and communities.
Medical information is typically important to have when a disaster hits, and HIM professionals can provide patients with guidance, education, and support in the use of personal health records and patient portals, bringing this vital information as close as a mere click away.
Julie Wolter (firstname.lastname@example.org) is an associate professor at Saint Louis University, based in St. Louis, MO. Marsha Dolan (email@example.com) is program director at Missouri Western State University, based in Saint Joseph, MO. Julie Dooling (firstname.lastname@example.org) is a director of HIM solutions at AHIMA.
Wolter, Julie; Dolan, Marsha; Dooling, Julie A.
"Consumer Preparedness in the Face of Disaster"
Journal of AHIMA