Treatment of chronically ill individuals and cancer patients often involves numerous healthcare professionals in a variety of disciplines, which requires a barrier-free flow of information between all the stakeholders. This is the only way to avoid duplicating procedures and ensure the best possible quality of care.
Taking “focus on the patient” as its premise, the Rhine-Neckar Healthcare Region’s main objective was to network health-related facilities, pull together treatment-relevant patient data from the various treatment settings, and thus achieve lasting improvement in the treatment of chronically ill patients. The Federal Ministry of Education and Research therefore provided funding for the INFOPAT (Information Technology for Patient-oriented Healthcare) project between 2012 and 2017 as part of the “Health Region of the Future” competition.
One of the main elements of the project was establishing a personal cross-enterprise PEPA (see Perspectives No. 2). Cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg were given the opportunity to test the prototype for a PEPA patient portal in real-world treatment situations for three months as part of a feasibility study. One of its goals was to determine how a PEPA should be designed and implemented from the perspective of patients with bowel cancer and other gastrointestinal tumor diseases.
Requirements and implementation
A highly detailed “wish list” was then developed in advance using various qualitative methods, which combined all the major patient requirements for the PEPA. This made it possible to create an “ideal,” highly detailed concept for the PEPA, which was to be incorporated into the PEPA prototype development process as closely as possible.
For the most part, the patients surveyed expect the PEPA to be a central and secure storage location for all the documents and information connected with their illness. They themselves want to have quick and easy access to its contents and the ability to share that information with others, such as doctors or family members.
The feasibility study led to some initial conclusions as to how well the PEPA has fulfilled these requirements so far. Overall, the people surveyed had a positive opinion of the functions provided; these were primarily supplementary information services related to their illness and support services, along with document management and assigning access rights. Many considered simple navigation through the numerous treatment-related documents to be a plus, as it allowed them to get information quickly and go into doctor visits well prepared and focused. However, the patients surveyed also saw the potential for improvement. For example, many wanted a powerful search function, including full text search, as well as a customizable folder structure.
Patient opinions of the PEPA:
“I DON’T HAVE TO KEEP TELLING THE DOCTORS WHAT I HAVE. THE DOCTOR HAS ALL THE INFORMATION ABOUT ME RIGHT THERE IN THE PEPA RECORDS; I CONSIDER THAT A BENEFIT FOR ME AND I THINK IT’S GOOD.”
“I THINK IT’S IMPORTANT TO TALK TO THE DOCTOR FIRST; THEY SHOULD EXPLAIN INFORMATION TO ME, ANSWER QUESTIONS, AND DISCUSS FURTHER TREATMENT WITH ME.”
“THE PEPA MEANS EXTRA WORK FOR (PRIMARY CARE) DOCTORS; BUT THEY’D HAVE TO MANAGE.”
Unfortunately, it was only possible to evaluate access rights management to a very limited extent in the course of the study, as too few service providers participated in it. This highlights a current weak point in the PEPA. The record only has a chance to succeed if it is populated with data from all sides—by patients as well as service providers—and kept up to date. Some patients had concerns about whether their (primary care) doctors would be willing and able to do their part.
This project shows that the technical design of a PEPA is only one side of the coin. The other side is changes that need to be made within healthcare itself. As its name indicates, the PEPA gets its life in no small part from the patients’ willingness to play a more central role in their own treatment process. The PEPA makes them information gatekeepers and brokers. While they carry more responsibility, they also gain transparency regarding their personal healthcare. Both the feasibility study and the surveys conducted in advance of it show how important targeted education and support services are for patients: They can only make proper use of the PEPA if they have the necessary know-how to manage their records. A collaborative relationship between patient and doctor is just as important. This much is clear: More information for the patient does not automatically mean that they will be better informed. The doctor should instead help the patient to put that information into context and make use of it. However simple and intuitively designed a PEPA may be, there is still the risk that it will fail in its purpose without a well-conceived healthcare system in the background.
FOR FURTHER REFERENCE:
Baudendistel, Ines et al.: The patients’ active role in managing a personal electronic health record: A qualitative analysis. Support Care Cancer. 2015 Sep;23(9):2613-21. doi: 10.1007/s00520-015-2620-1.
Baudendistel, Ines et al.: Personal electronic health records: understanding user requirements and needs in chronic cancer care. J Med Internet Res. 2015 May 21;17(5):e121. doi: 10.2196/jmir.3884.
Kunz, Aline et al.: Strengthening Interprofessional Requirements Engineering Through Action Sheets: A Pilot Study. JMIR Hum Factors. e25. doi: 10.2196/humanfactors.5364.
Ose, Dominik et al.: A Personal Electronic Health Record: Study Protocol of a Feasibility Study on Implementation in a Real-World Health Care Setting. JMIR Res Protoc. 2017 Mar 2;6(3):e33. doi: 10.2196/resprot.6314.