PhD candidate: Ana Martí Delgado – UIC Barcelona

Thesis supervisor: Dr Xavier Corbella – UIC Barcelona

Co-supervisor: Dra Mª Dolors Navarro – UIC Barcelona

Ana Martí Delgado handed in her thesis “Citizens’ rights with respect to health and the health services of the National Health System: An analysis of the extent of the implementation of patients’ rights” in June 2017.

She presented her thesis on the 27 September 2017 and was awarded honours.

Citizens’ rights in relation to health and healthcare provision from the Spanish national health system’s hospital network: an analysis of the extent of implementation of patients’ rights. 

 

Introduction

The advancement of medicine and the evolution of current societies have led to a new focus on the doctor-patient relationship, where patient rights have become part of the basic axis of health care. Over the last decades, important legislative developments have taken place, both at international as well as at the state and regional levels, in order to create legislation guaranteeing these rights. However, there are still few methodological tools and published studies that provide evidence on the degree of fulfilment of these rights, prompting us the present investigation and Doctoral Thesis.

Objectives

To design and validate a newly created questionnaire as a useful and efficient research tool to collect information on the degree of compliance with the rights of patients admitted to the hospitals of our National Health System (NHS). Moreover, and based on this new survey, to analyze the degree of compliance of patients’ rights in our NHS, and their associated factors, in a group of hospitals belonging to different Autonomous Communities (AC).

Methods

The initial design of the new questionnaire (GIDEPAH) was done by the research team in September 2013, based on the Charter of Rights and Duties of Patients in Catalonia (CRDPC). This first version of the survey included 7 of the CRDPC’s 10 areas of action, with a total of 37 possible rights to choose from. The 7 areas included were: 1) autonomy of the person, 2) privacy and confidentiality, 3) prevention of disease and promotion, 4) information on care and access to clinical documentation, 5) information and participation of users, 6) access to health care and 7) quality of care. Between November and December 2013, this first questionnaire was validated by a panel of experts from the Spanish Society of User Care, using the Delphi Method, in two rounds of consultation to reach consensus. Thereafter, from July to October 2014, a pilot test was conducted in 2 primary care centers from Barcelona to assess the maximum understanding of the questionnaire in a group of real patients who had been hospitalized during the month prior to the completion of the survey.

A descriptive study was carried out by the final GIDEPAH questionnaire on the degree of implementation of patients’ rights, and their associated factors, in 18 NHS hospitals belonging to Catalonia, Castilla-La Mancha and Madrid. From October 2015 to December 2016, a sample of patients hospitalized in the Internal Medicine, General Surgery and Traumatology Services who spent a minimum of one night were included. Patients with a hospital stay shorter than 24 hours, patients <18 years old, patients with intellectual disabilities and patients referred to other hospitals when discharged were excluded. Each participating hospital were asked to survey 42 patients (14 Internal Medicine, 14 General Surgery and 14 Traumatology patients), requiring a minimum of a global of 10 patients surveyed to be included in the study for analysis. Data collected included socio-demographic variables (age, gender, level of education and occupation) and organizational characteristics of the center (type of service where the patient was treated ─general surgery, traumatology and internal medicine─, and hospital admission route ─programmed or urgent─).

Results

By using the Delphi Method, 9 of the 11 expert panellists answered in the first round, so the participation was 82%, reaching a consensus of 58% of the total 33 questions proposed in the initial survey. In the second round, 8 of the 9 panellists answered, so the participation was 89%, reaching a consensus of 86% of the questions. After incorporating the modifications in the questionnaire according to the agreement reached, the resulting survey was applied as a pilot assessment to a sample of 34 patients, the majority of whom were men (58.8%), with current retired occupations (58.8%), and with incomplete or uneducated primary education (41.2%). In the pilot test, the mean response time was 15 minutes.

The total study sample was 659 patients. Overall compliance with the rights of patients from the hospitals studied did not exceed 50%. By areas of performance, the percentages of compliance were: 1) autonomy of the person (43%), 2) privacy and confidentiality (13.3%), 3) prevention of disease and promotion (0%), 4) Assistance and access to clinical documentation (22.7%), 5) information and participation of users (3%), 6) access to health care (9.6%) and 7) quality of care (10%). Patients of more advanced age, regardless of gender, but with an intermediate level of education or without studies, an occupation of unemployed or retired, admitted through the emergency department in a non-surgical service (internal medicine), were those that showed an increased risk of breach of their rights.

Conclusions

A research instrument such as the GIDEPAH survey can allow the evaluation of the degree of fulfilment of patients’ rights from an objective perspective. Worryingly, in our study, the overall compliance of patients’ rights in the hospitals studied did not exceed 50%, an unacceptable value regarding the current legal norms and declarations in force. Interestingly, results showed that there were several profiles of patients that are positively or negatively associated with the level of implementation of each right. Considering these differential factors should be a good starting point for planning future actions aimed at improving the current level of compliance of patients’ rights.