Initiatives to define a patient-centred research agenda

Glòria Galvez
 

By Society of Hospital Medicine

Despite the strong impact that the results of clinical research have on the health and quality of life of patients, the contributions they make remain anecdotal and do not go beyond participating as passive subjects in clinical trials. This, together with the practice of opportunistic strategies such as calling patients at the last moment to give their impressions of their participation, makes it necessary to move towards a new model of biomedical research in which, in addition to carrying out pharmacological studies, it seeks to respond to unresolved questions that would undoubtedly improve the patient experience.

In this sense, the James Lind Alliance initiative stands out; here patients, caregivers and professionals prioritize unresolved questions about the effects produced by some treatments so that the organizations that finance the research can discover the problems that people value most. Along the same lines, the Patient-Centered Outcomes Research Institute (PCORI) has worked and shared standards to formulate patient-centred clinical research questions. The methodology used can be found in the article recently published in the journal BMJ.

More recently, the American Society for Hospital Medicine committee, which serves to improve hospital outcomes through patient engagement (i-Hope), has collaborated with patients and other stakeholders to create a research agenda focused on the patient. Based on the methodology of PCORI and the James Lind Alliance, Harrison and colleagues have published a study in which patients, family members and other stakeholders have drawn up a list of research topics that they consider priorities to improve the care of hospitalized patients. At the same time, they have created a network of collaborators to advise, review and participate in future research that responds to these priorities.

The steering committee that oversaw this work, made up of patients in collaboration with health professionals and researchers, also invited other patients and interest groups to answer a questionnaire that would allow prioritizing the three main aspects to be answered to improve care hospitably.

Eleven research questions were selected, classified in order of importance, which can be consulted at this link or in this list:

1. What actions ensure shared decision-making?
2. What are the most effective practices for the transition between the hospital and other assistive devices after discharge?
3. How can the healthcare team better educate on drug use and medical conditions to reduce possible errors during hospital care and in coordination at discharge?
4. What do patients understand by a collaborative discharge process that empowers them and allows them to effectively manage their health once they are at home?
5. How can patients identify and overcome barriers to understanding the information provided during hospitalization and at discharge?
6. Can telemedicine be used to decrease readmissions or to improve transition in inpatient care?
7. Who should the patient call after discharge if she has questions, concerns, or needs to contact the appropriate resources?
8. How can patients and professionals collaborate effectively so that information related to diagnosis, testing and treatment after discharge is understandable?
9. What are the patient's expectations regarding pain management?
10. What are the best interventions to optimize treatment across the entire patient care?
11. Would be providing clearer and more accessible information on hospital routines, such as parking, cafeteria or protocols for entering rooms, would it mean a better experience for the patient compared to normal practices?

If we analyze the questions considered as priorities by the respondents, three main themes stand out:

a) Patients and caregivers wish to participate in the shared decision making. An issue that worries us all and that presents important areas for improvement also in the larger clinical services with more workload.

b) Patients want to have a reference professional whom they can contact if problems or doubts arise after discharge or during the transition between the different healthcare devices.

c) Lastly, patients warn us that providing them with educational material without a complementary and adequate explanation from the health team does not by itself improve their understanding of the care they have to follow.

From this study, the scientific community and health professionals will be able to focus research questions on everything that matters most to patients. On the other hand, those responsible for health policies, as well as funding agencies, will be able to use the results of this study to promote more appropriate improvements that favour a better patient experience.