9/14/04
Personal Health Records: The New Frontier
Leslie Ann Fox, MA, RHIA, Patty Thierry Sheridan, MBA, RHIA, CCS
Thank you to Advance Magazine for permission to use this article

Patty: As the health care industry bounds toward electronic health records (EHR) and the national health information infrastructure (NHII), the concept of personal health records (PHR) is emerging as a new frontier for pioneering HIM professionals. Creating the roles and functions of consumer health information advocates is fast becoming a priority in health care organizations that are already providing patients with access and control over their health information.

Leslie: I want to put a challenge out to our readers to create urgency in their organizations for the consumer health information advocate role . And to partner with the marketing, physicians, nurses, library and information technology departments to make it happen.

Patty: That's a great challenge Leslie, and an opportunity for HIM once again to create and deliver value to an organization. Have you had a chance to read the latest report issued by Connecting for Health?

Leslie: Yes, I have read the July 2004 report "Connecting Americans to Their Healthcare". (www.connectingforhealth.org ), which was prepared by the Working Group on Policies for Electronic Information Sharing Between Doctors and Patients. The group discovered "many creative efforts underway to offer electronic solutions that cross the patient-clinician information chasm," as well as "enthusiastic patients, clinicians and technologists, united in their passion to permit individuals to be more engaged and successful managers of their own health."

Patty: The report was also clear that much work remains to be done. The Working Group made three principle recommendations for action for 2004 to 2006. These recommendations are to increase public awareness and understanding of the value of personal health records, to seek vendor and provider agreement on design principles and policies, and to conduct a small number of PHR demonstration projects.

Leslie: It is interesting to me that the Working Group conducted a national telephone survey that revealed a strong interest by consumers in having convenient access to their health information. We have all experienced or heard stories of extreme frustration with helping a loved one gather records from multiple providers when moving or starting with a new physician or health plan. We have been a mobile society for a long time; it is amazing to me that the public hasn't been more adamant in demanding easier access to their information.

Patty: I agree Leslie. Sometimes it seems that everyone can read our records, but us! According to the report, 61 percent of the respondents "strongly agree" and 22 percent "somewhat agree" with the statement: "It's my health information. I should have access to it any time, any place."

Leslie: However, the road ahead has many obstacles. The Working Group noted that technical, cultural, professional, legal and financial challenges lie ahead before the majority of Americans will routinely have access to a PHR.

Patty: Did you have a chance last week to talk with Mary Reeves, RHIA? I understand that she is already facing the challenges of PHRs.

Leslie: Yes, I did call her to hear first hand how the challenges are being addressed in her institution. Mary Reeves, RHIA, is the director of medical information services at Vanderbilt University Medical Center in Nashville, TN. She granted me an interview on how she has been involved with providing patients access to their health information online.

Patty: That's great. Can you tell us about the conversation?

Leslie: Sure. Here is a playback of our conversation:

Leslie: Hi Mary. Thank you for agreeing to share the story of your PHR project with our readers. Please give us some background on the project.

Mary: Well, it has been quite an endeavor to set up a portal for patients to access their health information. We first opened the site to adults in October 2003. The first step was to get people to sign up for it. To sign up and get an access code, we required people to come in person with a picture ID. Only 1,200 people signed up that way.

Leslie: That must have been disappointing. It's like giving a party and nobody shows up!

Mary: Yes, we were disappointed, but we didn't give up. People found it was inconvenient to come to the hospital just to sign up and get their access codes, so we changed the policy to provide two levels of access. Now people can sign up online by entering demographic information and selecting a password for limited access. The next time they come to the hospital with a picture ID, they can get a code for full access if they want it.

Leslie: What does limited access get the individual?

Mary: The first feature we launched was secure messaging with their physicians. So many people were already sending e-mail to their physicians we were very anxious to get those messages into a secure environment. People with limited access can also schedule appointments.

Leslie: After security, what was the biggest concern about corresponding with physicians by e-mail?

Mary: It is important to educate the patients about what kind of messages they can send to their physicians. For example, we don't want anybody using e-mail to seek emergency care. We needed to inform people that this feature was only for certain information that didn't require an immediate response.

Leslie: What else does the limited access provide?

Mary: Patients can complete certain forms online. For example, they can fill out some of the intake forms and a medical history form. Patients with chronic diseases will also be able to monitor and report bio-statistics, e.g. blood pressure, blood sugar, temperature and weight.

Leslie: What about laboratory results? Will the patients be able to get their results online?

Mary: Yes, we envision that eventually they will be able to get results. This is a feature that before we launch we need to work through the concerns of some physicians. They worry about giving access to results before the patient's physician has had a chance to look at them. We know that people want to know their results right away. I certainly want my results immediately. However, at our physician forums, some said they are worried that a patient might get "bad news" without the benefit of a health care professional present to calmly explain the information and to immediately discuss next steps and treatment options.

Leslie: I'm sure alerts can be programmed into the system to denote information that must be reported to a physician before being put online for patients to access.

Mary: The project team needs to think through all of the circumstances when a physician would need to be notified prior to information being made available online. It is a big project and will take some time yet. Some physicians may want a policy that physicians must authorize a patient to have access to lab results. These are issues that must be discussed and considered carefully.

Leslie: If laboratory findings can raise concerns, I am sure that other sensitive information or situations also must be considered.

Mary: Yes, we do have other issues. For example we are concerned about instances of domestic violence. We are concerned that another family member may get access to the patient's private password when the patient really doesn't want that family member to see their records. A battered wife seeking care may be afraid if she knows her husband might see the records. We haven't even begun to put pediatric records online because of the access issues that must be considered related to that population.

Leslie: Can you give us some examples of the concerns with the records of minors?

Mary: Parents will have access to the records until the patient turns 18. The system can be set up to cut off access to the parents at that time. However, the law allows minors to seek certain health care treatments without parental permission. The access to those records might discourage those patients from seeking needed care. Also, we have concerns about cases of child abuse that must be reported. If the charges are proven, the patient then becomes a ward of the state and the parents would have to lose access to the records. However, what about access in cases of "suspected" child abuse? Again, it is a question of determining all of the alerts that are needed, getting the alerts programmed, and still keeping the system customer friendly.

Leslie: Mary, it sounds like you have been very involved in this project. What has your role been?

Mary: First, it has been to educate physicians and others in the organization about the HIM role. It has been exciting to work with the chairman of our medical record committee, the clinician sponsor of the project. He is leading the project with enthusiasm and understands the clinical issues and the technical issues. He also realizes that HIM professionals have credentials that are essential in managing the PHRs, so I have a good advocate leading the team.

Leslie: Do you see the role of HIM professionals as also educating the patients on how to use the system?

Mary: Absolutely. We must guide patients through the process. Even before the PHRs are fully implemented, I believe HIM professional should be encouraging all people to maintain their own health records. The AHIMA Web site, www.myphr.com is one way that the profession is already educating the public about HIM practices.

Leslie: As I noted earlier in our column, consumers already seem very interested in being able to access their records.

Mary: That certainly has been my experience. We are even seeing more patients than ever coming to the HIM department to view their paper records. We have to sit with them to help them understand what they are reading and where the information comes from. It takes a lot of time. Some want to make changes in the record. Usually patients who come to read their record ask for the whole record. We explain that much of it is electronic and that if we print it all, in some cases it will be very big. However, we do accommodate their request if they still want to see the whole document.

Leslie: Mary, thank you for sharing your experience with us. You have given our readers much to think about, as they will eventually grapple with these same challenges. I hope we can check in with you again to see how you are progressing and evolving the role of consumer health information advocate.

Patty: That was a fascinating discussion Leslie. Mary is a fabulous role model for all of us.

Leslie: Yes she is a great role model, and her story affirms that HIM professionals most definitely have an important role as consumer health information advocates. This is only the beginning!

Leslie Ann Fox is chief executive officer and Patty Thierry Sheridan is president of Care Communications Inc., a national HIM consulting and staffing company headquartered in Chicago. They invite readers to send their thoughts and opinions on this column to lfox@care-communications.com or pthierry@care-communications.com .