‘Our Views, Our Voices’ Celebrates Five Years of Humanising Experiences of People Living with NCDs
NCD Diaries: NCD Alliance celebrates five years of its "Our Views, Our Voices" project
NCD Diaries: NCD Alliance celebrates five years of its “Our Views, Our Voices” project’Our Views, Our Voices’ Celebrates Five Years of Humanising Experiences of People Living with NCDs

For five years, the NCD Alliance has been calling out that those directly affected by non-communicable diseases (NCDs) have mostly been absent from the decision-making that affects their health and lives directly and indirectly through several initiatives. One of them, “Our Views, Our Voices,” a series of multimedia diaries, recently celebrated five years since its launch.

The diaries, multimedia logs that help humanise critical issues, have provided a platform for people living with NCDs to share their experiences and call for action to improve their daily lives.

“We believe it is important to amplify lived experiences from across the world to offer a snapshot of how NCDs are impacting people’s daily lives, how people are organising within their communities in response, and what their asks are of decision makers,” said Cristina Parsons Perez, Capacity Development Director of the NCD Alliance.

She said that until recently, people living with chronic illnesses have been absent from the decision-making that affects their health.

“For policies, programmes and initiatives to benefit people living with NCDs, they need to be co-designed with those they are meant to be reaching,” Perez explained. “They are the ones who are navigating often complex health systems and insurance schemes and dealing with a really wide array of challenges in meeting their health needs.

“Making sure that people living with NCDs are sharing their day-to-day experiences through platforms like the NCD Diaries helps build a public narrative on NCDs that iputspeople first,” she continued. “These voices help build awareness of challenges experienced by people living with NCDs, inspiring others also to share their stories calling for change and imparting urgency with decision makers.”

Advocacy Agenda of People Living with NCDs

In 2017, the alliance collected the views of 2,000 people living with NCDs from around the world to learn about their experiences. This led to the development of the “Advocacy Agenda of People Living with NCDs,” which Perez said highlights consistencies that cut across geographies and conditions. This agenda has helped guide the efforts of the NCD community.

Core challenges and sentiments that tend to be shared by the majority of people living with a diverse range of NCDs include mental and emotional impact, prevalence of stigma, lack of awareness and affordability.

“Many millions of people are driven or driven further into poverty every year due to their catastrophic out-of-pocket spending on NCD treatment and care, while others choose to bypass spending money on care in order to keep food on the table,” Perez said. “This is a decision that no person should be forced to make, and something that must be urgently addressed as a matter of social justice.”

In general, the themes of NCD Alliance’s advocacy work and the diaries hold particular relevance to the NCD response at the national level and align with global policy and advocacy opportunities, such as the upcoming UN High-Level Meeting on Universal Health Coverage in 2023.

“The aim of achieving Universal Health Coverage is among the noblest of our times, but can health systems truly meet the needs of all?” Perez asked. “The first step has to be hearing from the people who depend on the care the most – including people living with noncommunicable diseases (NCDs).

“The NCD Diaries provides people living with NCDs with a platform to voice their needs, challenges and hopes in relation to health.”

Perez noted that since the advocacy agenda and the diaries project were created five years ago, nine national advocacy agendas of people living with NCDs have been created in different countries.

Off track to meet global targets

At the same time, the majority of countries are off track to meet global targets on reducing premature mortality due to NCDs.

“But we know what needs to be done and the good news is that all countries, especially LMICs, can achieve or nearly achieve SDG 3.4, by introducing a realistic and cost-effective package of NCD prevention and treatment interventions,” Perez explained. “I am hopeful that progress is possible with leadership and whole-of-government and whole-of-society action.”

The one aspect that is beginning to gain traction is the meaningful involvement of people living with NCDs in official health policy decision-making. In Kenya, for example, people with NCDs helped contribute to the new National Strategic Plan on NCDs.

Last month, the World Health Organization held an open online consultation on a zero draft Framework for Meaningful Engagement of People Living with NCDs and Mental Health Conditions.

“This WHO Framework will aim to support WHO and Member States in the meaningful engagement of individuals with lived experience to co-create and enhance related policies, programmes and services,” Perez explained. “This is a major step in the right direction – five years ago, when the Our Views, Our Voices initiative started, meaningful involvement of people living with NCDs was barely defined as a concept, and now there is an international framework being developed around it.”

However, in other areas, there is still room for improvement, she said, such as financing, ensuring healthy environments where making the healthy choice is the easy choice, and accessibility of quality care, treatments and medicines.

NCD Diaries help humanise NCDs

The individuals contributing to the Our Views, Our Voices project are affiliated with the national NCD alliances that the organisation collaborates with globally. They were selected through a competitive process by the NCD Alliance’s Our Views, Our Voices advisory committee and against a set of criteria.

The diaries are produced over a set period to offer a snapshot of what it is like for that individual to live with his or her NCD. Diaries can be written or tap into multimedia resources, such as photos or video.

Those who are selected, Perez said, are given workshops on how to build their narrative. Each contributor is assigned one of four themes covering the experience of living with multiple conditions, the affordability of care, the impact of healthcare providers on people’s NCD journey or NCD prevention.

Once a diary is completed, it is not updated. But contributors are encouraged to continue to share their experience through other platforms, according to Perez.

“The NCD Diaries are mostly intended to help humanise NCDs and call for decision makers to put people first – we’d like for them to be read by decision-makers, policymakers – but the audience is not limited,” Perez said. “The NCD Diaries are also important for the general public – everyone, everywhere, can benefit from a greater understanding of the challenges people living with NCDs face, and in turn, people living with NCDs can benefit from this understanding.”

She said that she hopes these stories “build empathy, which translates into public support for policies that benefit people living with NCDs.”

She said that roughly 25% of the world’s population lives with an NCD, meaning everyone is likely to have one or know someone who does.

“If reading the NCD Diaries can help make that clear, the project has already accomplished a great achievement,” Perez concluded.

Read NCD Diaries:

Image Credits: Photos provided by NCD Alliance.

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