Intended for healthcare professionals


Patients’ roles and rights in research

BMJ 2018; 362 doi: (Published 25 July 2018) Cite this as: BMJ 2018;362:k3193

Research, rights and outcomes in psychosis

Patients and stakeholders take part in every step of psychosis care pathways; their involvement is the basic element to improve a correct therapeutical relation, aiming to overcome refusal and compulsion.

Patients, stakeholders and clinicians should aim to enhance outcomes in psychosis management. Research shows that clinical management and outcomes of psychosis are closely connected and requires decades of care and integrated treatments.

Stakeholders and patients are often requested about the side effects of medicaments, as well as about the personal relationships with the crews of mental health departments. It is a basic element to recognize a shared role in improvement of psychosis care. For example, some neuroleptics can reduce delusions successfully, but patients and stakeholders can complain about physical side effects bothering a normal working day. It is a daily situation in mental health care: the right of patient and stakeholders to request a more adequate treatment. These opinions need to be accepted by clinicians, who not infrequently may fear new therapies which “could reduce side effects but could not in the meantime reduce delusions successfully”.

Sharing information for research means that patients, stakeholders and clinicians can get together and establish what is important to be explored. It means that patients and stakeholders can express opinions and clinicians can listen to them and recognise their rights.

On the other side, they have not always an equivalent position, because of responsibility, which is always different for all involved subjects. Patients often have a strictly dual relationship, accepting or refusing treatments; stakeholders challenge clinicians to overcome guilt and uncertainty about relatives’ life and management; clinicians more and more have a defensive way of working in order to limit responsibility. Not always do they sit together and discuss, not always do they recognise each other's right of expression outside of “institutional roles”.

It would be noteworthy for all, and it would Improve clinical management, when we all will learn to share opinions with patients and stakeholders; it would also help in reducing disputes and complaints and also in reducing compulsory treatments.

Research in mental healthcare should not only point to drugs and side effects but must be open to some more topics:

- quality of life: personal, familial and in communities;
- the ability to have a personal role as worker and as a parent for a child, and also as an adult caring for elderly parents;
- the ability of patients to have a life free from drugs and alcohol outside closed facilities or prisons;
- the ability to limit self harm;
- the ability of the MHD to reduce hospitalisations and access to sheltered facilities and reduce compulsory treatments.

These points of daily work in mental health need to be based on the opinions of patients, stakeholders and institutions (municipalities, GP, social insurance…). These data could also be useful for ameliorating outcomes of the complex management of psychosis.

It should also be kept in mind that reduced acute hospital costs with regular therapies mean also reduced stress for families and patients. For this specific point, we know how to measure hospitalization costs, but we don’t know how to measure the stress of families and patients. That means, we know only how to measure economics but other values need still to be defined: what is the value of one year without psychotic accidents, or one year with a parent in a sheltered facility, dislocated far away from his or her original city?

Two examples for a shared work in searching new ways of integrated treatments.

Competing interests: No competing interests

05 November 2018
Damiani Tiberio
Asur Marche, Area Vasta 5, mental health department
Via degli Iris Ascoli PIceno