Findings on inclusion and being visible to decision makers

The findings for the question “what is important for decision makers to know about you, your life and your views?” has been categorised by sub-theme and reported with quotes to illustrate points and provide deeper insight.

Participants raised several aspects in their lives which they thought were important for decision makers to know. These ranged from personal circumstances and characteristics and insights into their lives.

Personal circumstances

Participants highlighted a range of important issues for decision makers to consider, such as their:

  • personal health and care needs
  • household circumstances and living conditions
  • personal or household finances (for example income)
  • political views
  • local issues

Some participants noted that it was important for decision makers to be aware of their health issues and care needs, which covered physical and mental health. There was also some reference to the NHS and the need for better funding to support these health issues and care needs.

“Having health issues is a hindrance. The pandemic is not really helping at all, having to shield.” (Woman, 56, lacking digital skills).

“More money to be spent on the health service particularly important for me that there is mental health provision for young people. A very long waiting list. Not enough money spent on caring for the disadvantaged: social workers, health care, physio, and NHS dentists.” (Woman, 40, lacking digital skills).

Some participants also listed income and personal financial circumstances as important for decision makers to know about.

“I would like to be asked about my needs and how my lower income has changed my lifestyle.” (Man, 64, digitally impoverished).

“I think it is important they take into account my financial situation.” (Woman, 79, lacking digital skills).

Living circumstances were also noted as key issues decision makers should be aware of. This was sometimes linked to income but also included matters relating to housing and living situations.

“Where I live, [such as a] house, flat, or apartment owned or rented in area.” (Woman, 68, lacking digital skills).

“It is important for people to understand life with a child.” (Woman, 24, digitally impoverished).

Local issues such as amenities, services and transport were also raised as important issues for some participants. Specific references were also made to needs of those living in rural areas.

“They need to know how to improve services I use.” (Woman, 60, digitally impoverished).

“They need to talk and see first-hand how people actually live within their means or without good services and transport etc.” (Woman, 45, lacking digital infrastructure).

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Personal characteristics

Some participants listed specific demographic characteristics as being important for decision makers to be aware of, such as age, sex, gender, and ethnicity.

“It is important for them to know my background, age, and life stage to inform decisions.” (Woman, 55, lacking digital infrastructure).

Although the importance of raising awareness of individual characteristics was outlined, much like the views towards individual differences, some participants stressed that they did not want to be defined by these characteristics.

“Not to judge a book by its cover.” (Woman, 47, digitally impoverished).

“I for example don’t want assumptions made about me based on age, gender, education level etc.” (Woman, 67, lacking digital infrastructure).

Some participants encouraged the use of inclusive practices and the need to have representation of various groups across society. One participant noted that decision makers should act in the best interest of all.

“The most important thing is to be treated equally. To look at every walk of life.” (Man, 64, digitally impoverished).

“Inclusion of all people affected by decisions. Especially ethnic minorities, LGBTQ+ and women.” (Woman, 23, lacking digital infrastructure).

“Tackle all forms of inequality in the UK.” (Man, 56, lacking digital skills).

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People’s lived experiences

In sharing what was important for decision makers to know about them specifically, participants provided insights into their lived experiences covering various personal experiences and circumstances.

“I am a pensioner, living alone, healthy, intelligent and financially secure. I no longer choose to drive a car and have no computer or mobile phone – only a landline. I can access the internet only by visiting my local library. I walk regularly and play sport but rely on public transport.” (Man, 77, digitally impoverished).

“I am a mother of three children under the age of 13 and worry often about their social future as after school clubs, activities and summer plans are very limited along with leisure centres, soft play and mother and toddler groups are no longer in use even before the pandemic began.” (Woman, 37, digitally impoverished).

“I worry about global warming and my grandchildren’s future. How long I have to wait if I need an operation or treatment on NHS.” (Woman, 79, lacking digital skills).

“I am a lady living with a physical disability from an acquired brain injury. I look to enjoy each day as it comes and believe my views and opinions are important and matter as much as anyone else’s. Being disabled does not define me.” (Woman, 57, lacking digital skills).

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Why are these things important for decision makers to know?

Participants noted that, before making decisions on their behalf, it was important for decision makers to be aware of, and understand, individual experiences.

“It is significant for decision makers to be appropriately informed on my personal and collective livelihood.” (Woman, 36, lacking digital skills)

“If I wanted decisions to be focused on me and my lifestyle I would expect to have to give some personal information.” (Man, 38, digitally impoverished).

However, one participant reported not giving any insights into their life or views because they did not think decision makers needed to know about their personal details. They felt that respecting their privacy was more important.

“I don’t really think there is anything that people need to know about me. I like to be private.” (Woman, 84, lacking digital skills).

Participants’ perceptions around the importance of sharing political views differed. Whilst some felt their political views should be considered by decision makers, others suggested they would prefer to keep their “politics private”.

“As a citizen of the UK I believe my perspectives opinions and strongly held views should be rightfully and morally considered.” (Woman, 36, lacking digital skills).

“I prefer to keep my politics private.” (Woman, 75, digitally impoverished).

Some participants also had mixed views on whether characteristics such as sexuality and religion were important for decision-makers to take into account.

“I don’t think my sexuality or religion need to be considered.” (Woman, 25, lacking digital infrastructure).

For decision makers to better understand individual circumstances and make decisions in the best interests of those affected, it was suggested that further research could be conducted to gain insight into individuals’ perspectives and experiences. Participants raised the importance of the individuals affected “being listened to” and their views being considered.

“I think the decision [makers] should conduct survey, interviews, focus groups to ask/get to know my life and my views.” (Woman, 27, digitally impoverished).

“They really need to be able to listen. Really listen and understand.” (Woman, 45, lacking digital infrastructure).

“Decision makers cannot help us and provide what we need if they are not aware of our views.” (Woman, 56, lacking digital infrastructure).

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How digital exclusion affects perceived inclusion

On inclusion, some participants made specific reference to their experiences of digital exclusion. Concerns were expressed around the growing number of services being provided online alongside an awareness of their own lack of digital skills.

“I don’t have access to internet or mobile phone so I worry about everything being online. Where does that leave me in the future?” (Woman, 79, lacking digital skills).

“Our age, we don’t take too well to change, advanced technology is not too good at our age.” (Woman, 82, lacking digital skills).

There was also specific mention of the need for decision makers to be aware of difficulties relating to digital exclusion to avoid further exclusionary practises.

“I can access the internet only by visiting my local library … Decision makers and companies should stop assuming that everyone has internet access.” (Man, 77, digitally impoverished).

“Decision makers tend to forget that not everyone has access to the internet and also tend to sideline older people, especially if they live in more rural areas. Policy makers forget about this group too often.” (Woman, 68, lacking digital skills).

“Rural communities are sometimes very remote and just looking on a map is very different to actually coming to see how remote it actually is. Decision makers need to come and visit the area and speak to local people.” (Woman, 45, lacking digital infrastructure).

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