Patients' use of medicines information for managing long-term medication: When the weakest link makes the chain stronger

Research output: ThesisPh.D. thesis

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Patients using long-term medication for chronic conditions (chronic medicine users) are recognized as active managers of their own care, needing to make decisions about medicine-taking in complex treatments with limited contact to health professionals. For this task, patients need and use information on medicines (medicines information). The need for such information is not always met, resulting in patients’ dissatisfaction, non-adherence, lack of treatment success, adverse events and medical errors. However, patients are described as contributing to quality and safety of healthcare by providing information and feedback. Patients’ use of medicines information for navigating successfully through long-term medication processes is however, scarcely understood.

The aim of this thesis was to analyze, how patients use medicines information for managing long-term medical treatment, and to investigate how this may contribute to safety and quality of their medical treatment. Further, I wanted to provide theoretical reflections on patients' roles and the impact of medicines information in establishing resilience in patients’ long-term treatment processes.

The thesis is grounded in systems- and communications theories and apply a ‘Safety-II’ approach, acknowledging that long-term medication is complex and context-dependent, and that people are often adapting their behavior to achieve successful outcomes. The thesis understands patients’ ‘managing with information’ in the course of their treatment as central for safety and quality of long-term medical treatment. With patients as central for this thesis work, I chose to follow patients’ own explanations about what ‘medicines information’ was to them.

The thesis explored patients’ use of, and managing with, medicines information through two qualitative semi-structured interview-studies with fifteen participants in total. The results of the analyses are communicated through three articles.

For analyzing patient interviews, I used thematic analysis according to Braun and Clarke (article 1 and 3) and Halkiers’ ideal-typologizing (article 2). In the interpretation of patients self-managing through dialogues with health professionals, I was also inspired by a social constructionists’ approach to co-creation of meaning through dialogues, and Axel Honneths’ theories on recognition.
The first article highlighted how patients play an active role in information handling, being proactive in resolving variation during their treatment, through their use of information. The analysis identified five strategies applied by patients for facilitating managing of their treatment course. The five strategies are:

1) Actively seeking and using supplementary written information
2) Asking questions and providing information to health professionals
3) Using own background knowledge and experience
4) Using knowledge and experience of network
5) Information managing and use at home

Two of the strategies had the potential to be used in a way that could also hinder patient’s managing of medication.

The second article presents a typology identifying four different patients practices for managing medication with information. The patient types were distinguished by patients’ different ways of self-managing on their own and through relations with health professionals. The patient-types are:

I: The self-determined, highly self-managing patient
II: The security-seeking, self-managing patient
III: The dependent patient with limited self-managing
IV: The patient co-managing with close family

Across the four different managing practices, all patients used their personal experience and needed to be recognized by health professionals. However, patients’ individual safety behaviors caused a difference in their potential for enhancing systems resilience.

In the third article, patients’ managing with mandatory medicines information from the health system, i.e. professional medicines information, was investigated. Patients expressed needing professional information for being safe and for managing treatment. Part of the information facilitated patients’ managing by enabling their active participation, including

-concrete information on side effects and interactions on the package leaflet
-easy-to-read, tailored, and relevant supplementary written information
-oral information from pharmacy staff and nurses
-information received on patients’ demand from health professionals
-successful dialogues with health professionals, primarily doctors

Generally, ‘time-independent’ information facilitated patients’ managing. In contrast, other elements of the professional information hindered patients’ managing of medicine, including:
-length, terminology and content of package leaflets
-lack of information
-lack of successful dialogues with health professionals

Timing was expressed as a hindrance in terms of ‘bad timing’, ‘delayed information’ and ‘lack of time’.

Results from the three analyses are presented in a new model, highlighting the central role of patients’ search for, provision of and use of information for the overall quality of medical treatment. I argue that patients manage medicines successfully through receiving oral and written medicines information (i.e. by transmission) and providing (i.e. by feedback) information, and through dialogues with and recognition by health professionals. While patient information on medicines is still often described as information from health professionals to patient, it seems time to evaluate and accept that patients’ individual use, and provision, of medicines information is an important element of long-term treatment courses. In this way coupling patient-experienced issues on quality with those of health professionals, as an integral part of a modern and resilient healthcare system.
Original languageEnglish
  • Tjørnhøj-Thomsen, Tine, Principal supervisor
  • Andersen, Stig Ejdrup, Co-supervisor, External person
Date of defence8. Feb 2021
Place of PublicationOdense
Publication statusPublished - Mar 2021

Bibliographical note


Note re. dissertation

- Electronic file of thesis is without manuscripts as a result of copyright issues. Articles can be accessed from links in the Thesis' Appendices, from the above additonal links (Andre links) and in the printed version of Ph.D.
- There are referrals to Table 1 (patient characteristics) in articles, from the thesis. This table can be accessed in published versions of manuscripts (articles) or in printed version of thesis


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