Developing a patient portal for haematology patients requires involvement of all stakeholders and a customised design, tailored to the individual needs

Electronic patient portals are increasingly being implemented, also in (haemato) oncology. However, portal usage is low and depends on user and provider engagement. We explored wishes, expectations and thoughts of patients with a haematologic malignancy and their physicians with regard to the electr...

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Bibliographic Details
Published in:	BMC medical informatics and decision making Vol. 19; no. 1; p. 129
Main Authors:	Geerts, Paul A F, van der Weijden, Trudy, Loeffen, Pien G M, Janssen, Lise E F, Almekinders, Celine, Wienhold, Tobias A, Bos, Gerard M J
Format:	Journal Article
Language:	English
Published:	England BioMed Central Ltd 11-07-2019 BioMed Central BMC
Subjects:	Adult Aged Ambulatory care facilities Attitude of Health Personnel Cancer Care and treatment Female Haematologic neoplasms Haematology Hematology Humans Male Medical care Medical Oncology Middle Aged Neoplasms Patient Acceptance of Health Care Patient Portals Physicians Stakeholder Participation Telemedicine Tumors Haematology Haematologic neoplasms Patient portals Telemedicine Neoplasms
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Summary:	Electronic patient portals are increasingly being implemented, also in (haemato) oncology. However, portal usage is low and depends on user and provider engagement. We explored wishes, expectations and thoughts of patients with a haematologic malignancy and their physicians with regard to the electronic patient portal. Based on insights from literature and a focus group discussion we built a 44-item questionnaire. This questionnaire was spread amongst patients with a haematologic malignancy at the outpatient clinic that was not yet exposed to patient portal facilities. Haematologists completed a questionnaire based on literature. Patients were interested in many different types of access to information and portal functionalities. However, their opinions varied about the provision of access to the portal to other people, the role of the physician, possibilities for communication via the portal and timing of access. The physicians acknowledged the relevance of the electronic patient portal, but had some worries about the patients' autonomous information handling, organizational and technical issues. Patients frequently expressed to be open about the potential of the patient portal to orchestrate their care. Nevertheless, most physicians appreciated their supporting role towards the patient. Patients and physicians appreciated the electronic patient portal. Both groups need to be involved in further portal development to improve engagement by meeting patients' wishes, taking into account organizational and professional issues and managing expectations for both parties. To fit various patient profiles, portal design should be flexible and individualized. Further research should focus on the perceived added value and the impact on patient related outcome measures of portals.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1472-6947 1472-6947
DOI:	10.1186/s12911-019-0868-y