Our Views, Our Voices consultation on COVID-19 and Building Back Better

143

Number of Respondents

41

Number of Countries

Meaningful Involvement: Addressing What Matters

We asked people living with NCDs to provide their perspective on why and how their meaningful involvement can help to shape the NCD response within and beyond the COVID-19 pandemic.

In your country, to what extent are people living with NCDs involved in the decision-making process for planning and implementation of health and NCD services and policies?

Which of the following would you consider the top five guiding principles for the meaningful involvement of people living with NCDs:

Which of the following do you think are necessary for people living with NCDs to be meaningfully involved in the NCD response:

20.00% Training opportunities

Training opportunities, dedicated resources and information for the development of knowledge and skills

20.00%

Training opportunities

13.90% Supportive organisational policies

Supportive organisational policies/institutional commitment to meaningful involvement

13.90%

Supportive organisational policies

17.32% Political commitment

Political will and commitment to ensure meaningful involvement in decision-making processes

17.32%

Political commitment

11.46% Recognition of expertise and leadership

Recognition of expertise, competencies and leadership of PLWNCDs

11.46%

Recognition of expertise and leadership

12.68% Opportunities and platforms for involvement

Opportunities and platforms for involvement, including in leadership / decision-making roles

12.68%

Opportunities and platforms for involvement

12.20% Strong civil society and networks

Strong civil society organisations and networks of PLWNCDs

12.20%

Strong civil society and networks

11.95% Support and resources

Support and resources to make involvement accessible and inclusive for a range of individuals

11.95%

Support and resources

0.49% Other responses

Other (please specify)

0.49%

Other responses

0.49% of Respondents answered 'Other' key themes included:

Which of these opportunities for meaningful involvement of people living with NCDs in decision-making is most important?

Becoming involved in the design, planning, implemenation and evaluation of health prgogrames and services
Holding decision makers accountable through monitoring mechanisms that include permanent representation from people living with NCDs
Representing civil society and people living with NCDs in NCD related discussions at the global and regional levels
Having a seat in participatory governance platforms, e.g national government decision-making and policy-setting mechanisms
Becoming involved in social participatory processes
Other

0.76% of Respondents answered 'Other' key themes included:

Why do you think people living with NCDs must be involved in decision-making processes?

  • “Because they are the experts in living with their condition(s) day in, day out! If you haven't experienced something you cannot ever hope to fully understand or empathise. So, you need this input - it is invaluable & necessary!”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “I think because they are directly affected by the pandemic, they will make decisions that will be more meaningful due to the fact that they will be acting from experience. ”

    Care Partner, Cameroon

  • “Medical professionals and politicians are not in the know of the challenges that a diverse group of NCD patients face. There are many scenarios and it is always complex.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Malaysia

  • “I think they should be involved because they know how it feels to live with NCDs and what they can do to improve their state of health.”

    Care Partner, Cameroon

  • “As the saying goes, "Nothing for us without us". My thoughts are that no decision should be made about anyone who is still alive unless they've been proven to be insane. Again it's the shoe wearer who knows where it pinches. When people living with NCDs are involved in decision making, they shall share exactly what their challenges are and how/what can be done to make it bearable for them.”

    Person living with Cancer, Kenya

  • “Because we feel so far from decision making. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “Involvement of PLWNCDs with the decision making process through real-time sharing of experiences and solutions to the obstacles will have a meaningful and positive outcome on the NCD programme.”

    Care Partner, India

  • “Unless you've gone through it it's hard to imagine. ”

    Person living with Cancer, Canada

  • “"Nothing about us without us."”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United States of America

  • “Ethical Decision Description: An ethical decision is one that engenders trust, and thus indicates responsibility, fairness and caring to an individual. To be ethical, one has to demonstrate respect, and responsibility. The benefits of the stakeholder approach in ethical decision making creates positive relationship with the stakeholders. It results in streamlined process of decision making and addresses the expectations of the stakeholders.”

    Person living with Endometriosis, United States of America

  • “It will favour PLWNCDs and laws will be put in place for their betterment. ”

    Person living with Mental health disorders, Zimbabwe

  • “Politicians need perspective, in the form of people's experiences, while they are reviewing and making up words on thousands of formal documents. Without the involvement of PLWNCDs, decision-making processes are empty, unsustainable vessels.”

    Person living with Mental health disorders, South Africa

  • “They have the experience”

    Care Partner, South Africa

  • “Because it is very important that patients are taken into account when making decisions. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Colombia

  • “It is important for PLWNCDSs to be involved because they have personal experiences of the challenges they face. Decisions should involve those most affected. ”

    Care Partner, Swaziland

  • “It is fundamental that people who are affected by any public service be given the opportunity to engage and to participate in decisionmaking about their health....”

    Care Partner, Sri Lanka

  • “Only People Living with NCDs have the necessary "lived experience" to justify what is actually essential for them. Since any decision is going to impact us directly, we, the PLWNCDs, must be part of the decision-making process to ensure that the right decisions are made. ”

    Person living with Diabetes, India

  • “People living with NCDs have first hand experience of the health care system. PlWNCDs know and have experienced the gaps in our health care systems, which are otherewise not visible to the public or policy makers, so their experience is the expertise which will help in shaping policies in terms of planning, implementing and evaluating.”

    Person living with Chronic respiratory disease, India

  • “People who live with NCDs are advocates for their peers and themselves. The patient voice needs to be included to inform policies. Ensuring that these policies are relevant and do not inflict unnecessary burdens will make them more relevant to those living with NCDs. #NothingAboutUsWithoutUs”

    Person living with Chronic respiratory disease, United Kingdom of Great Britain and Northern Ireland

  • “It makes them have self reliance and own their decisions.”

    Care Partner, Uganda

  • “The people who are living with NCDs best know the issues they face and how they manage those issues in their individual capacity. Having them in the decision making process will not just be an added perspective but the best solutions will come from them. Most logical yet feasible responses and decisions are made when they come from the horse's mouth. Moreover, NCDs bring with them social stigma and so it becomes a sensitive subject. Involving people living with NCDs in the decision making process will not just empower them but also can be a step in uprooting societal stigma. ”

    Person living with Neurological disorder, India

  • “They know the problems and available practical solutions. Policy-makers are more likely to listen to them.”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Being a patient, I should know what tablets are prescribed to me and how that is affecting my health condition.”

    Person living with Cardiovascular disease (CVD), India

  • “Actually that is because people living with NCDs are the the ones who are going to be affected mostly by the decisions made, whether good or not. Therefore, their presence should spot out some of decisions that can work better or that can be more meaningful compared to others.”

    Person living with Diabetes, Rwanda

  • “PLWNCDs should be involved in decision making because they are coming with experience of living with the condition. They would better understand without bias what would address their needs. Their participation would give hope and voice to PLWNCDs.”

    Person living with Diabetes, Nigeria

  • “They can make informed decisions due to their condition. ”

    Person living with Eye or ear conditions, Ghana

  • “We are humans and Ghanaians. Nobody has monopoly over knowledge, hence our expertise must be harnessed. ”

    Person living with Eye or ear conditions, Ghana

  • “We are equally Ghanaians and must be treated with respect and dignity”

    Person living with visually impaired and old age, Ghana

  • “It becomes need based.”

    Person living with Cardiovascular disease (CVD), India

  • “As they have the lived experience of being a service user and would have the knowledge of what works and what doesn't, what is needed to change policy and how to empower their local authorities and grass roots communities. Making sure the diverse need of all communities are met, including the seldom heard voices due to language barriers, and assess needs of disabled communities. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), United Kingdom of Great Britain and Northern Ireland

  • “PLWNCDs must be involved in decition making processes because they are the people who are bearing the brand and know the situation better. ”

    Person living with Diabetes, Ghana

  • “They must be involved because they are the most experienced to describe how they are affected by the various NCDs.”

    Care Partner, Ghana

  • “It is important that we bring the face of PLWNCDs into the programmes from their first hand experience. PLWNCDs must be part of the decisions about thier own issues.”

    Care Partner, Malawi

  • “I think people living with NCDs must be involved in decision-making process because those decisions that are taken are for them and they are the ones affected. ”

    Person living with Diabetes, Rwanda

  • “They have living expert experiences on what is required for a patient.They posses expert knowledge which can assist to shape programming,monitoring and evaluation over and about passionate participation. ”

    Person living with Hiv/Aids, Malawi

  • “Regular evaluation”

    Care Partner, Brazil

  • “They have the condition and understand their situation and experiences best. They should give insight and first hand information about what is best for them. Coupled with academic and other professional training, this can enable them to be better serviced. ”

    Care Partner, Cameroon

  • “It's important to include the lived experience of NCDs as an adjunct to data.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Ireland

  • “For ownership and sustainability”

    Care Partner, Uganda

  • “People living with NCDs understand the weight of political decisions regarding their care pathways. They know the financial and psychological burden of living with long term health conditions and how daily decisions are required to navigate each day safely. ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “So that policies evolving from such consultations include the inputs of the practical (and not theoretical) experiences. ”

    Care Partner, India

  • “I think that people living with NCDs must be involved in decision making process because they are practitioners, so they will give their opinion and suggestion based on the experiences in their lives. ”

    Person living with Cancer, Indonesia

  • “Participatory programming and budgeting and SDOHs / human rights approach to care.”

    Person living with Neurological disorder, Germany

  • “Because our disability is not inability. Our skills and competence is much needed in the development agenda of our nation.”

    Person living with Visually impaired, Ghana

  • “People living with Non-Communicable Diseases (NCDs) offer Unique, Invaluable Insights. Effectively addressing NCDs requires understanding how these diseases affect people and the challenges and needs that people face as they navigate healthcare systems and daily life. Learning from the lived experience and first-hand knowledge of NCDs is essential to improving policies, services, programmes. It drives Results, and organisations that carry out genuine meaningful involvement activities stand to benefit in many ways. Government transparency and accountability, more effective use of public funds for health or concrete improvements in health service delivery. All sectors can meaningfully involve people living with NCDs to improve NCD prevention and control initiatives. ”

    Person living with Endometriosis, Ghana

  • “They are the people who live with the disease. With time they even become better than the doctors. Getting them involved can help the lives of the people who are new to the diseases.”

    Person living with Diabetes, Kenya

  • “Only taking in touch what means to "suuger" a NCD supoose to well understand patiens and peolpe living with NCD”

    Care Partner, Chile

  • “Because we are the experts on living with the condition(s); we have an insight that no government, scientific researcher, medic or health professional will know without having the condition themselves. This insight can ensure money is spent on the right services, in the right place at the right time rather than on what other people think we need. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Ireland

  • “Participation in such processes allows a better match of outcomes desired. ”

    Care Partner, Brunei Darussalam

  • “To ensure a patient-centric approach”

    Person living with Cardiovascular disease (CVD), Switzerland

  • “This will serve as encouragement for them that they are also observed As a promotion of mental health in the sense that stigmatization would be reduced. They will also have a meaningful life.”

    Care Partner, Ghana

  • “Effectively addressing NCDs requires an understanding how these diseases affect people and the challenges and needs that people face as they navigate healthcare systems and daily life. Learning from the lived experience and first-hand knowledge of NCDs is essential to improving policies, services, programs and social beliefs. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), India

  • “I think everyone should take an active interest in their own health. By taking an interest, the person is likely to do some research into their condition. So to be involved in the decision making process regarding treatment is a natural progression to this belief. ”

    Person living with Cancer, United Kingdom of Great Britain and Northern Ireland

  • “Because we are in the Patients as Partners era of medicine and have important lessons to bring from our lived experience, particularly regarding rare NCDs.”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), United Kingdom of Great Britain and Northern Ireland

  • “It can never be about PLWNCDs without them. ”

    Care Partner, Nigeria

  • “Because they wear the shoes and know where it pinches”

    Person living with Stroke, Nigeria

  • “Because they can make much more informed decisions to deal with their condition”

    Person living with Diabetes, India

  • “This is because they understand their condition better and will be in a good position to share their lived experiences better during the process of making decisions. Also, including persons with NCDs in the decision making process will ensure the concept of equity between persons living with NCDs and the population. Thus, equal opportunity for all and hence reduced discrimination. This will also make people living with NCDs valuable in society. This will make them feel they are as important as the others within society. Lastly, persons living with NCDs are also humans and are therefore entitled to fundamental human rights that are by including them in the decision making process.”

    Person living with Diabetes, Ghana

  • “WHO says existing high-level commitments have not afforded neurological conditions the political priority on national agendas that they require, but we need action not acknowledgement! In 2018, mental & neurological disorders were added to the list of priority NCDs. But only 24% of countries worldwide have stand-alone neurological health policies. This must change!”

    Person living with Neurological disorder, Ireland

  • “Because it is about them, their bodies, there health, their right. ”

    Person living with Cardiovascular disease (CVD), Kenya

  • “To voice out our experience”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “Because they have EXPERIENCE with the diseases, they understand the gaps in health system .They are champions in the NCDs field.”

    Care Partner, Kenya

  • “So that they can voice out what the real problems are that they are facing through their experience. Also, the policies affect them the most.”

    Person living with Cardiovascular disease (CVD), Malaysia

  • “Decisions made will be based on their real life experiences”

    Person living with Cancer, Malaysia

  • “Strongly agree with this statement and I believe keeping a patient-centered approach in healthcare is the need of the hour. We must complete the circle of decision making by keeping people with lived experience as a position of a key stakeholder. ”

    Person living with Diabetes, India

  • “They actually understand and have first hand experience of how it feels to live with NCDs. The struggle and the experience has empowered them to be the best advocates for health-concerning matters and fight for the whole nation.”

    Care Partner, Kenya

  • “Because we have the experience ”

    Person living with Cancer, Trinidad and Tobago

  • “They would have a better understanding. ”

    Person living with Eye or ear conditions, Trinidad and Tobago

  • “Because they have first hand experience that would be useful when making decisions related to their health and lives.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “Por la experiencia que se ha acumulado como sujeto de este tipo de padecimiento. SI desde edades tempranas se hubiera puesto interés en que los niños aprendieran sobre este tipo de problemas, atenuaría la carga para las autoridades sanitarias.”

    Care Partner, Mexico

  • “Because they are the centre of it all! ”

    Person living with Neurological disorder, Belgium

  • “They are better informed of the problems due to lived experiences, making them better placed to be part of the solution.”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Zimbabwe

  • “We understand what we need and how to work with other people who are living with NCDs.”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Vietnam

  • “Two words : lived experience”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), India

  • “Because we experience these healthcare systems that decision-makers and policy-makers create. Therefore we are able to give insight and feedback that will create a better healthcare system. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Kenya

  • “People who live with NCDs are better at understanding what it is like with the condition. They can provide better insight to having an NCD and being a part of a bigger voice.”

    Person living with Diabetes, Belize

  • “Because we live the experience as NCD patients and feel the impact of decisions that were made. While many policy makers and healthcare professionals make decision on healthcare for the benefit of NCD patients, with the best intentions, they will have blindspots. That is because some of the decisions they make will be based on their own lenses. We are talking beyond the efficiency of a system to how some processes can be more effective and compassionate. This is why people living with NCDs must be involved in decision making processes.”

    Person living with Cancer, Singapore

  • “They play a vital role to get involved in decision making and they can give the right guidance of how care can be reached by a normal person of a low income group, what they will face in problems related to NCDs, they can put this in decision making”

    Care Partner, India

  • “To bridge the gap and change the mindset of people, it's important to have an army of PLWNCDs that can help people through their own experiences within the reach of health system. They can further provide support to engage and develop the full range of services needed on the ground level to improve the lives of people and bridge the gaps. ”

    Person living with Diabetes, India

  • “Because we cannot continue to watch our health initiatives without taking an active role in this process. Health is a value that does not exist without patients. Neither the industry, nor the government nor the medical society can make health happen without us, patients, being in agreement with the treatment, the protocol or the package leaflet. All health recommendations take into account the patient's active participation. We no longer want to be the end of our own health production line. We want to participate in all stages. We don't want to be doctors but we want to be partners, co-authors of advances because, after all, we will be the main stakeholders, the beneficiaries or the "guinea pigs" of all these advances. "Nothing about us, without us."”

    Person living with Diabetes, Brazil

  • “They have a better understanding of what is happening to them and also what they have to deal with every day.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “To ensure people living with NCDs have solutions to address and support individuals in decisions to improve their health. ”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “People living with NCDs must be involved in decision making because they are among the most important stakeholders in issues involving their care and treatment. Since they are the ones living with the conditions, they are better placed to make decisions that affect their care as they have intimate knowledge and experiences of what it takes to live with the conditions. People with non communicable diseases need to be empowered to have a voice in issues that concern their welfare.”

    Person living with Diabetes, Zimbabwe

  • “We are our own experts, we don't want new processes/systems or medication without our input at the beginning, middle and the end.”

    Person living with Diabetes, United Kingdom of Great Britain and Northern Ireland

  • “People with NCDs must be involved in decision making processes because they are the ones who are directly faced with the challenges of managing their conditions. They know exactly what they want and must therefore be given the opportunity to present their cases, which are in most cases suitable for people who will be living with NCDs. ”

    Person living with Diabetes, Zimbabwe

  • “Because measures taken must work in practice not only in theory.”

    Person living with Cancer, Denmark

  • “To manifest what is really needed.”

    Person living with Diabetes, Denmark

  • “Not talking about those impacted without them being in the room to guarantee needs are met. ”

    Person living with Diabetes, United States of America

  • “Because we know how it is to live with it and we are more likely to understand others living with the same disease. ”

    Person living with Obesity, Denmark

  • “People who have no lived experience can only speculate on what is needed to help a person. ”

    Person living with Mental health disorders, United Kingdom of Great Britain and Northern Ireland

  • “Because we have already had evidence that when we manage to engage people, the Government recognizes the cause and our legitimacy. Thus, we promote improvement in access to appropriate treatment.”

    Person living with Diabetes, Brazil

  • “Nothing about us without us!”

    Person living with Obesity, United States of America

  • “Their involvement helps to control ncd risk factors. ”

    Care Partner, Libya

  • “Without the patient perspective how can any solution be patient-centric?”

    Person living with Cancer, Singapore

  • “We are ultimately the recipients of public health care services and programmes and therefore should be at the centre of every system set up for our purpose. ”

    Person living with Eye or ear conditions, Singapore

  • “1. People living with NCDs bring unique perspectives to the decision making process that have huge benefits which healthcare providers and policy makers might not be aware of. 2. The stories of PLWNCDs are powerful tools for advocacy and change, that can drive for results more effectively in addition to data and research. 3. PLWNCDs, once involved in the process would then demand accountability more persistently ensuring better results from programs. ”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Uganda

  • “The person that wears the shoe knows where the shoe pinches. It is good to hear from the horse's mouth. We feel the pain and we know what's going to be the best for us. ”

    Person living with Diabetes, Nigeria

  • “The reason people living with NCDs should be involved in decision-making is they understand the burden of people living with NCDs and their care partners. Plus they could be a good source of information country wide with NCD related news and realities. ”

    Person living with Diabetes, Ethiopia

  • “They are the experts in their disease and know what is important for them.”

    Person living with Cardiovascular disease (CVD), Germany

  • “If everyone sits back and just observes then no change will happen. We need to stand up and be heard. ”

    Person living with Bone and/or joint conditions (e.g. osteoporosis, arthritis, etc, etc), Canada

  • “Because it affects them most”

    Person living with Autoimmune disorder (e.g psoriasis, multiple sclerosis, lupus etc), Philippines

  • “Yes, as the slogan goes -€œwithout us, nothing for us". We need a serious and dedicated advocate to increase community awareness about NCDs and for better public policies and health systems in order to address PLWNCDs.”

    Person living with Cardiovascular disease (CVD), Nigeria

  • “Nothing for us without us. But who is 'us'? https://www.linkedin.com/pulse/voice-representation-community-participation-global-response-uhrig/”

    Person living with Cardiovascular disease (CVD), United States of America

  • “They are best placed since they know about the problems faced since the start, during and after the disease. In this case, they make proposals on what should be done to deal with the problems. They can therefore make constructive suggestions.”

    Person living with Cancer, Burundi

  • “They are the only people who know exactly how their illness affects them. Deciding on behalf of other people has never had positive results; rather, the opposite has been the case.”

    Person living with Obesity, France

  • “People living with NCDs and their care givers can share real time personal stories of challenge without any copyright issue; instead with ultimate passion, vividly and from the heart. This is so because their voices originate from the heart and come out through their mouth via the brain. Heard stories, unfortunately, lack emotions, tears, passion, feeling of dejection, struggle , helplessness and though the words do come out from the mouth they do not originate in the heart. So they lack the pulse and hence the connect.”

    Care Partner, India

  • “We need to be empowered.”

    Person living with Cancer, Argentina

  • “Because the person who is experiencing and knows the reality of the problem is the best placed to understand and put forward solutions.”

    Care Partner, Argentina

  • “Because they are living with and experiencing the disease, so they are more aware of the issue than somebody who has not lived with it, and they understand the shortcomings of the support based on the management of NCDs through personal experience. ”

    Person living with Cancer, Mexico

  • “So that their rights are observed and they are listened to.”

    Person living with Diabetes, Uruguay

  • “They are the ones with first-hand information on needs and expectations.”

    Care Partner, Uruguay

  • “Because we are the same as people who are not living with NCDs and we have the same rights as well as the same obligations.”

    Person living with Diabetes, Uruguay

  • “To give guidance to governments on the real needs of people living with NCDs and not allow them to impose on us what is financially more convenient for them, but rather give us what we really need. For example: qualified healthcare teams, medication and updated technology, which have a higher cost but benefit people living with NCDs.”

    Person living with Diabetes, Uruguay

  • “Because we are often ignored or not taken into account when it comes to what our condition requires to improve our quality of life. It is important to listen to us.”

    Person living with Diabetes, Uruguay

  • “Because we know best what is essential to live with dignity and have a good quality of life.”

    Person living with Diabetes, Uruguay

  • “So that I am also included.”

    Person living with Diabetes, Uruguay

  • “They live with it and so they know what they need.”

    Person living with Diabetes, Uruguay

  • “Nobody knows better about their needs than the people living with NCDs.”

    Care Partner, Uruguay

  • “Because they have first-hand experience of what they need.”

    Person living with Diabetes, Uruguay

  • “Because they live with them and are the most interested in what is best and truly necessary, and have no commercial or political interests. Because they know fully about the reality they face.”

    Care Partner, Uruguay

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