Shokan Ualikhanov University
Higher School of Medicine
Topic” The role of patients in research , patient rights
Prepared by: Raza Murad, OMA 202
Checked by: Nurymzhan Murzagulov
• Patient and public involvement in research is becoming a
mainstream activity thanks to recognition by everyone in the
research process from funders and regulators to conference
organizers and publishers that it helps them do a better job.
There is certainly a strong case for increasing the value to
patients and the public from the billions spent on biomedical
research. The exponential rise in research output has seen a
decline in quality
• 1 and mounting concern about high levels of waste, bias,
inefficiency, and error.
• 2 A collaborative effort is needed to reform the research
enterprise, and patients and the public have a leading part to
play
• 3 Including patients and the public as partners in research
is accepted best practice in several Western countries, and
some funders make it mandatory. The BMJ supports this by
requiring authors to report the extent of patient and public
involvement in all submitted research.
• 4 It is clear, however, that some researchers struggle to
differentiate between qualitative research (when patients’
experiences are sought and used as data) and including
patients as true research partners (when their views and
experience contribute to decisions about the research
agenda and the design, conduct, and reporting of studies
• The failure to enshrine collaborative working with
patients perpetuates a status quo that focuses more on
developing new (patentable) products than developing
better services that deliver “kind, careful, minimally
disruptive care.”
• 5 Also neglected are initiatives to ensure that patient
communities can access and understand research
findings, identify what they add to previous evidence,
and use them to inform therapeutic decisions.
• 6 People in low income countries, where many drug
trials are conducted (and ethical standards vary), are
particularly side-lined—not least because many cannot
afford the medicines they helped to evaluate.
• The benefits of patient involvement are increasingly
accepted by drug companies, which are actively working
with patients
• 7 and realizing returns on this investment.
• 8 Simplifying protocols by minimizing burdensome
procedures or study visits can reduce research costs and
increase recruitment; including patients in the design of
recruitment materials can shorten enrolment periods;
focusing on what matters to patients can avoid costly
protocol amendments or problematic switching of
outcomes.
• Giving real power to patients and those who care
for them will entail shaking up existing research
hierarchies, not merely smoothing out a few
bumps in current practice. Senior researchers
should lead by example and embrace this
essential culture change. Coproduction of
research must go beyond a handful of enlightened
practitioners responding only to the most vocal
(and well funded) patient communities, to become
the new global norm for clinical research.
Patient’s Rights Patient’s rights are policies and
rules that must be preserved and protected by
the Health facility toward patients and their
families.
Patient and Family Rights
• knowing Patient and Family Rights and Responsibilities:
• Introduce the patient to the facility mission and the patient and
family rights and responsibilities toward it.
• Give a copy of the Patient and Family rights and responsibilities
Bill to the patient when he/she enter or register at the health
facility.
• Ensure that the Bill is available at health services departments in
an outstanding place.
Getting Health Care
• Provide the patient with the right treatment in the right time
without discrimination as to race, religion, believe, creed,
language, sex, age or disability.
• Ensure that the patient or his/her legal guardian is fully and
clearly informed about the case and health status in an
understandable language.
• Have an appropriate mechanism to educate them enough to
deal with the patient’s medical condition.
• Provide the patient with adequate nutrition that is
appropriate for his/her medical condition.
Privacy and Confidentiality
• Discuss the treatment with the patient or his/her legal
guardian confidentiality.
• Maintain the confidentiality of the patient's information unless it's legally needed.
• Refuse to see anyone not concerned with providing the
health service, including visitors.
• Have separated male and female waiting areas.
• Ensure the presence of someone of the same sex as the
patient in the
Privacy and Confidentiality
• Patient medical record is accessible only to:
• The medical team caring for the patient.
• The quality management program team.
• The health facility research team.
• People with a written authorization of the patient, legal
guardian or legal authorities.
Safety and Protection
• Provide patient with health care in a safe environment that is appropriate to the patient
health condition.
• Not to isolate the patient unless it’s needed.
• Safely transfer the patient from and to the health facility .
• Forbid smoking in all the health establishment facilities, and designate specific smoking
areas away from the places of health services.
Respect and Appreciation
• Treat the patient with courtesy and respect, with
appreciation of his/her individual dignity, no matter of the
time or conditions.
• Respect the patient’s identity by calling him/her with his/her
official name.
• Respect the patient’s cultural, psychosocial, spiritual and
personal values, beliefs and preferences.
• Asses and manage the patient pain appropriately.
Participation in the Healthcare Plan
• Provide the patient with complete and updated information about
the diagnosis and treatment in an understandable language.
• Introduce the patient to the identity and professional status of the
health care providers responsible of his treatment.
• Discuss the potential complications, risks, benefits and the
alternatives to the proposed procedures .
• Provide the patient or his/her legal guardian with needed
information before any treatment procedure or surgery.
• Inform the patient of the kind of interventions and medications used
in the treatment.
Refuse Treatment
• The patient or his/her legal guardian is fully responsible of his
decisions or acts in case he/she refused treatment or didn’t follow its
instructions.
• The health facility will continue provide appropriate health care to
the patient according to standard medical criteria.
• Inform the patient of other alternative treatments in case he refused
the treatment.
Participation in Research Studies
• Provide the patient with clear and comprehensive information about
the research or the used clinical, therapeutic and medication
treatment in addition to the expected outcomes.
• The patient has the right to give his or her consent or refusal to
participate before or during the research or the study.
•Researches and studies must be supervised and permitted by a
(scientific /official) committee or authority.
Organ and Tissues Donation Policies and
Procedures
10/ Health Insurance and Financial Policy
• The patient has the right to know in advance the expected
cost of treatment. 11/ Clear and Comprehensive Declaration
Forms
• Provide a list of interventions that requires separate
declaration like: surgeries, anesthesia, blood transfusions,
interventions and risky treatments such as radiation, chemical
and electrical therapies.
Complaints and Suggestions Policies and
Procedures
• The patient has the right to file a verbal or a written
complaint/suggestion, whether it is signed or not.
• The patient has the right to file a complaint to different
levels of the health facility.
• Deal with the patient and his/her family complaint as soon
as possible
Child Patient Rights
• In addition to the articles from 1 to 12, child patient is entitled to
• Examine the child by a specialized medical team.
• Provide the health facility with specialized equipment and tools for
children.
• Have a special policy to protect children from all kinds of harm.
• The medical team should report any violence against children to the
concerned authority.
• Avoid isolating the patient unless it's medically necessary.
Elderly Patient Rights
• In addition to the articles from 1 to 12, elderly patients are entitled
to:
• Meet their special needs in the health facility.
• Provide nourishing meals for inpatients.
• Provide needed health and treatment services to the patient.
• Facilitate making appointments and having their medical reports in
health facilities.
Psychiatric Patient Rights
• In addition to the articles from1 to 12, psychiatric patients are entitle
to:
• Have a special policy to protect psychiatric patients from all kinds of
harm.
• Ensure the patient’s freedom of movement and shouldn’t isolate
him/her unless it’s medically necessary.
• Facilitate providing treatment services by allocating mental health
clinics in the health facility.
• Provide suitable education and rehabilitation methods for long-stay
patients.
Special Needs Patient Rights
• In addition to the articles from 1 to 12, special needs patients are
entitle to:
• Provide the health facility with specialized equipment and tools for
special needs patients.
• Have a special policy to protect special needs patients from all kinds
of harm.
• Provide the health facility with suitable aisles and bathrooms.
Companion’s Rights
• Have clear policies in the health facility regarding patient
companions.
• Provide adequate nutrition.
• Provide mattresses or chairs that are used according to the adopted
regulations in the health facility.
Visitor’s Rights:
Visitors are entitle to:
Have suitable visiting hours.
• Have clear policies in the health facility in order to deal with
visitations in exceptional cases.
Patient and Family Responsibilities:
• Preserving the properties of the health facility and others. Using
the facilities and equipment in the health facilities safely and
correctly.
• Treating all personnel, patients and visitors with courtesy, and
respect.
• Following the general rules in addition to respecting others cultural,
spiritual and personal values and beliefs.
• Respecting the privacy of others.
• Following health facility regulations and instructions.
• Observing safety and security regulations in the health
facility.
• Keeping appointments and notifying the health facility when
the patient is unable to do so for any reason.
Patient and Family Responsibilities
• Following the rules and instructions: Presenting personal
identification. Providing complete and accurate information about the
patient’s personal and medical information. Informing the health care
providers of the surgeries he/she went through in addition to the
other health facilities he went to. Reporting any changes in the
patient’s health. Notifying the physician about lack of understanding
the treatment plan and interventions. Providing accurate and
complete information about the patient’s health insurance. Ensuring
that financial obligations due for the health facility are fulfilled
promptly
• Following the recommended treatment plan, where the
patient or his/her legal guardian is responsible for his/her
actions and the consequences in case he/she refused
treatment
• Providing accurate and complete information about the
patient’s health insurance. Ensuring that financial obligations
due for the health facility are fulfilled promptly. Following
the recommended treatment plan, where the patient or
his/her legal guardian is responsible for his/her actions and
the consequences in case he/she refused treatment
Thank you Everyone for your attention…