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.
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
13.90%
Supportive organisational policies
17.32%
Political commitment
11.46%
Recognition of expertise and leadership
12.68%
Opportunities and platforms for involvement
12.20%
Strong civil society and networks
11.95%
Support and resources
0.49%
Other responses
Why do you think people living with NCDs must be involved in decision-making processes?
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“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!”
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“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. ”
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“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.”
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“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.”
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“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.”
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“Because we feel so far from decision making. ”
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“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.”
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“Unless you've gone through it it's hard to imagine. ”
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“"Nothing about us without us."”
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“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.”
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“It will favour PLWNCDs and laws will be put in place for their betterment. ”
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“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.”
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“They have the experience”
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“Because it is very important that patients are taken into account when making decisions. ”
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“It is important for PLWNCDSs to be involved because they have personal experiences of the challenges they face. Decisions should involve those most affected. ”
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“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....”
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“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. ”
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“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.”
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“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”
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“It makes them have self reliance and own their decisions.”
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“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. ”
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“They know the problems and available practical solutions. Policy-makers are more likely to listen to them.”
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“Being a patient, I should know what tablets are prescribed to me and how that is affecting my health condition.”
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“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.”
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“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.”
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“They can make informed decisions due to their condition. ”
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“We are humans and Ghanaians. Nobody has monopoly over knowledge, hence our expertise must be harnessed. ”
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“We are equally Ghanaians and must be treated with respect and dignity”
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“It becomes need based.”
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“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. ”
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“PLWNCDs must be involved in decition making processes because they are the people who are bearing the brand and know the situation better. ”
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“They must be involved because they are the most experienced to describe how they are affected by the various NCDs.”
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“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.”
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“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. ”
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“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. ”
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“Regular evaluation”
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“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. ”
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“It's important to include the lived experience of NCDs as an adjunct to data.”
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“For ownership and sustainability”
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“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. ”
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“So that policies evolving from such consultations include the inputs of the practical (and not theoretical) experiences. ”
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“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. ”
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“Participatory programming and budgeting and SDOHs / human rights approach to care.”
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“Because our disability is not inability. Our skills and competence is much needed in the development agenda of our nation.”
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“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. ”
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“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.”
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“Only taking in touch what means to "suuger" a NCD supoose to well understand patiens and peolpe living with NCD”
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“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. ”
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“Participation in such processes allows a better match of outcomes desired. ”
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“To ensure a patient-centric approach”
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“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.”
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“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. ”
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“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. ”
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“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.”
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“It can never be about PLWNCDs without them. ”
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“Because they wear the shoes and know where it pinches”
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“Because they can make much more informed decisions to deal with their condition”
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“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.”
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“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!”
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“Because it is about them, their bodies, there health, their right. ”
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“To voice out our experience”
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“Because they have EXPERIENCE with the diseases, they understand the gaps in health system .They are champions in the NCDs field.”
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“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.”
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“Decisions made will be based on their real life experiences”
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“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. ”
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“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.”
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“Because we have the experience ”
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“They would have a better understanding. ”
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“Because they have first hand experience that would be useful when making decisions related to their health and lives.”
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“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, atenuarÃa la carga para las autoridades sanitarias.”
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“Because they are the centre of it all! ”
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“They are better informed of the problems due to lived experiences, making them better placed to be part of the solution.”
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“We understand what we need and how to work with other people who are living with NCDs.”
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“Two words : lived experience”
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“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. ”
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“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.”
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“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.”
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“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”
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“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. ”
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“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."”
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“They have a better understanding of what is happening to them and also what they have to deal with every day.”
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“To ensure people living with NCDs have solutions to address and support individuals in decisions to improve their health. ”
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“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.”
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“We are our own experts, we don't want new processes/systems or medication without our input at the beginning, middle and the end.”
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“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. ”
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“Because measures taken must work in practice not only in theory.”
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“To manifest what is really needed.”
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“Not talking about those impacted without them being in the room to guarantee needs are met. ”
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“Because we know how it is to live with it and we are more likely to understand others living with the same disease. ”
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“People who have no lived experience can only speculate on what is needed to help a person. ”
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“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.”
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“Nothing about us without us!”
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“Their involvement helps to control ncd risk factors. ”
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“Without the patient perspective how can any solution be patient-centric?”
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“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. ”
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“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. ”
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“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. ”
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“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. ”
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“They are the experts in their disease and know what is important for them.”
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“If everyone sits back and just observes then no change will happen. We need to stand up and be heard. ”
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“Because it affects them most”
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“Yes, as the slogan goes -without 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.”
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“Nothing for us without us. But who is 'us'? https://www.linkedin.com/pulse/voice-representation-community-participation-global-response-uhrig/”
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“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.”
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“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.”
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“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.”
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“We need to be empowered.”
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“Because the person who is experiencing and knows the reality of the problem is the best placed to understand and put forward solutions.”
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“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. ”
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“So that their rights are observed and they are listened to.”
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“They are the ones with first-hand information on needs and expectations.”
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“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.”
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“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.”
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“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.”
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“Because we know best what is essential to live with dignity and have a good quality of life.”
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“So that I am also included.”
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“They live with it and so they know what they need.”
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“Nobody knows better about their needs than the people living with NCDs.”
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“Because they have first-hand experience of what they need.”
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“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.”
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