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Patient's Right to Information in. Cancer Treatment and Health. Care - A Case Study of Pakistan. Written by. Khadija Khan. Independent Consultant Development ...
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Ho r i z o nRe s e a r c hPubl i s hi ng , USA

Chain of Communication and Patient’s Right to Information in Cancer Treatment and Health Care - A Case Study of Pakistan

Written by Khadija Khan Independent Consultant Development Evaluation and Human Rights, Austria and Dr. Naseem Begum Independent Consultant Oncologist, Pakistan

Horizon Research Publishing, USA

Horizon Research Publishing, USA

Horizon Research Publishing

Title:

Chain of Communication and Patient’s Right to Information in Cancer Treatment and Health Care - A Case Study of Pakistan

Authors: Edition:

Khadija Khan and Naseem Begum The First Edition

Published by: Horizon Research Publishing 2880 ZANKER RD STE 203 SAN JOSE, CA 95134 USA http://www.hrpub.org Printed on acid-free paper ISBN:

978-1-943484-16-4

Price:

$18.00 per copy (USA)

General Enquiries Publish with HRPUB, learn about our policies, submission guidelines etc. Email: [email protected] Notice This book contains information obtained from authentic and highly regarded sources. Reprinted material is quoted with permission, and sources are indicated. A wide variety of references are listed. Reasonable efforts have been made to publish reliable data and information, but the author and the publisher cannot assume responsibility for the validity of all materials or for the consequences of their use. Trademark Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Copyright © 2017 Horizon Research Publishing Co., LTD This work is subject to copyright. All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without written permission from the author, except for the inclusion of brief quotations in a review.

Horizon Research Publishing

Preface

Preface The Physician-Patient Relationship (PPR) is being built on three factors: professional advice, medical treatment and care. The fourth factor that cuts across these three is ‘communication’. Whereas the first three are evident from the medical record of the patient, the fourth one is indiscernible or too small to be seen. As a result, it is difficult to establish what kind of information is being communicated to patients and how does it impact patients’ decision making about treatment options. Due to physician-patient privacy accord, direct observation of conversation is not advisable although critical; therefore the researchers have to rely on the perception of parties involved. The work presented in this book was carried out in Pakistan during 2016-2017. We conceptualized the idea and developed a mixed method research design with triangulation and representative sampling techniques. However, when we landed to collect data, we had to adjust our methodology according to ground realities. We adopted the approach, ‘willingness to participate’ in order to encourage respondents (oncologists) to share information and opinions about communication practices between oncologists and cancer patients, and patients’ relatives. The book consists of five chapters; chapter one provides an introduction to the problem and the context, both general and country context as well as the objective of the study. Chapter two explains various steps of methodology including the approach adopted for sample selection and analytical techniques. Chapter three contains summaries of findings of the survey and interviews complemented with researchers’ key observations. Chapter four is exclusively devoted to discussion on Patient’s Rights, in particular ‘Right to Information’ and ‘Democratic Decision Making’ (Informed Consent) which was the raison d’être of this research work. In chapter five, the researchers put forwards a hierarchy of conclusions and recommendations to develop a national communication strategy for cancer treatment and health care to protect patients’ rights. The study, despite some information gaps about cancer institutions and infrastructure, has successfully revealed an array of critical issues regarding patient’s right to information and the process of decision making in physician-patient communication practices. Its approach, methodology and instruments have been tested in the field and are replicable in other cases with similar conditions in low and middle income countries (LMICs), particularly in Asia and Africa.

I Horizon Research Publishing

Acronyms

Acronyms BN CEDAW CRC CT-SCAN EU HIPAA

Balochistan (Province of) Convention on the Elimination of All Forms of Discrimination Against Women Convention on the Rights of the Child Computed Tomography European Union The Health Insurance Portability Accountability Act (USA)

IAEA

International Atomic Energy Agency

ICCPR

International Covenant on Civil and Political Rights

ICESCR KPK LMICs

International Covenant on Economic, Social and Cultural Rights Khyber Pakhtun Khuwa (Province of) Low and Middle Income Countries

MRI

Magnetic Resonance Imaging

NCC

National Cancer Control

PAEC

Pakistan Atomic Energy Commission

PB&I

Punjab (Province of) and Islamabad Territory

PET

Positron Emission Tomography

PPR

Physician-Patient Relationship

SD

Sindh (Province of)

SF

Sub Factor

SPECT

Single-photon Emission Computed Tomography

UDHR

Universal Declaration of Human Rights

UK

United Kingdom

UN

United Nations

USA

United States of America

WB

World Bank

WHO

World Health Organization

II Horizon Research Publishing

Contents

Page No.

Contents

Preface .................................................................................................................. I Acronyms ............................................................................................................ II Chapter 1: Introduction, Context and Objective of the Study ........................1 1.1. Introduction ....................................................................................................2 1.2. Significance of the Study ...............................................................................2 1.3. Context ...........................................................................................................2 1.3.1. General Context ...............................................................................2 1.3.2. Country Context ...............................................................................5 1.4. Objective of the Study ....................................................................................6 Chapter 2: Research Design, Techniques and Tools ........................................7 2.1. Methodology and Process ..............................................................................8 2.1.1. Defining Scope of Study ..................................................................8 2.1.2. Sample Selection Approach and Its Limitations ..............................9 2.2. Data Collection Techniques and Tools ........................................................10 2.3. Data Analysis Techniques and Tools ...........................................................12 2.3.1. Statistical Analysis of Survey Questionnaire .................................12 2.3.2. Content Analysis of Individual Interviews/Focus Groups .............12 2.3.3. Patients/Relatives’ Testimonies and Observations ........................12 Chapter 3: Reporting of Results ......................................................................13 3.1. Summary of Findings from Survey Questionnaire Responses .....................15 3.2. Summary of Findings from Content Analysis of Interviews........................20 3.3. The Impasse in Transcribing Patients’ Testimonies.....................................23 3.4. Researchers’ Observations ...........................................................................24 Chapter 4: Discussion .......................................................................................27 4.1. Patient’s Right to Information and Communication Practices .....................28 III Horizon Research Publishing

Contents

4.2. Other Prevalent Rights Issues ......................................................................31 Chapter 5: Conclusions and Recommendations .............................................33 5.1. Conclusions ..................................................................................................34 5.2. Recommendations for Cancer Communication Strategy .............................35 Annexes ..............................................................................................................39 Annex 1a. Survey Questionnaire - Oncologists .......................................39 Annex 1b. Interview Questions- Oncologists ..........................................44 Annex 2. Submission Statistics and Demographics .................................45 Annex 3. Tables of International/Multinational and National Patients’ Rights Documents [78] ............................................................................47 References and Notes ........................................................................................49 Acknowledgement .............................................................................................53 Dedication ..........................................................................................................54 List of Figures, Tables and Graphs Figure 1. Main Steps of Methodology and Process...............................................8 Figure 2. Double-edged Perspectives of Strategies and Recommendations .......23 Figure 3. Guiding Principles for Cancer Communication Strategy ....................38 Table 1. Submission Details ................................................................................14 Table 2. Survey Questionnaire Specifications ....................................................14 Table 3. Response Rate .......................................................................................15 Table 4. Recipient of Information .......................................................................17 Table 5. Relationship Score (Recipient Category) ..............................................19 Table 6. Comparison of Public-Private Health Setup .........................................24 Graph 1. Skewed Gender Graph in Physician-Patient Communication ..............18 Graph 2. Male/Female Gap in Physician-Patient Communication .....................18 Graph 3. General Challenges – Priority Areas ....................................................21 Graph 4. Specific Challenges – Priority Areas....................................................22

IV Horizon Research Publishing

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