Can social media reduce discrimination and ...

Can social media reduce discrimination and ignorance towards patients with long term conditions? A chronic kidney disease example in the UK and more widely PO-002 1 2 3 4 5 Shahid Muhammad , Amy Camilleri-Zahra , Howard Leicester , Heather Davis , Stephen Davis

1The Renal Patient Support Group (RPSG), England UK, 2National Commission Persons with Disabilities (NCPD), Malta Informatics and Data Accessibility, One Voice Coalition for Accessible Information Communication Technology (ICT), England UK 4, 5 The Kidney Disease and Renal Support (KDARS) Group for Young People with Chronic Kidney Disease (CKD), England UK

3Health

Aims

Methods

The objective of this paper is to 1) identify if the use of Social Media (SM) can help raise Discrimination and Ignorance awareness for people with Long-Term Conditions (LTCs) providing a Chronic Kidney Disease (CKD) example and Assistive Technology (AT) for people with Disabilities and 2) highlight perceptions through the Renal Patient Support Group (RPSG) social media network.

A Discrimination and Ignorance thread was posted on the Renal Patient Support Group (RPSG) for one month between September (2014) to October (2014) inviting members to post comments on their views to help answer the following questions: 1) have you ever had any discrimination/ faced ignorance against you? 2) to what extent? 3) Is this something you have had with CKD or before? 4) Do you find there are inequalities and indifferences because of disease/ any other reasons? 5) Is it through work and outside?

Background

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Patients with Long-Term Conditions (LTCs) account for around 50 % of GP appointments, 64 % of outpatient appointments and 70 % of hospital bed days (Department of Health 2012). Around 70 % of total health and care expenditure in England is attributed to people with LTCs (Department of Health 2012). People diagnosed with a number of LTCs are the most intensive users of health and social care services because their needs are usually more complex than those of people with single diseases. Most people aged 65 and over have multi-morbidity although a recent Scottish study found the absolute number of people with multi-morbidity was higher in those aged under 65, indicating its implications for the population as a whole (Barnett et al 2012). According to Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCPD), person/s with disabilities include: “Those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. (United Nations 2006).

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Between 2010 and 2030, it is estimated that the number of younger adults with learning disabilities (aged 18–64) will rise by 32.2 % from around 220,000 to around 290,000, and the number of younger adults with physical or sensory impairment by 7.5 % from almost 2,900,000 to 3,100,000 (Snell et al. 2011). Furthermore, rates of disability are increasing due to population ageing and increases in LTCs, among other causes (WHO, 2013).

Discrimination in Context •

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The Renal Patient Support Group (RPSG) Perspectives The RPSG received 31 comments and analysis helped derive two main themes: 1) Lack of Awareness, Education and Understanding “Yes there is a lot of ignorance out there. Even with the awareness, I face various ongoing obstacles - even with family members as well, absolutely”.

“Any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms. It includes all forms of discrimination, including denial of reasonable accommodation.” (United Nations 2006)

“I wouldn't suggest discrimination, because I feel that implies an intention of being mean. However I’m sure my peer group simply don’t understand what CKD means, despite my attempts at educating them”. “Lack of knowledge or awareness leads to ignorance and discrimination but to some extent I would disagree with being mean discrimination also equates to inequality, so basically if you have a long- term condition, you are of certain race/ colour, certain age, certain height - you'll find it a challenge to 1) progress, 2) lead a comfortable life and 3) be viewed as equal or 'normal' whatever that means”.

Relating to Discrimination is Ignorance, which is a state of being uninformed (having a lack of knowledge). this means sharpening focus upon human rights, upon discrimination and ignorance as actually experienced by people with a disability or LTC, respectively (Andersson and Lyttkens 1999). One way of improving the awareness of discrimination and ignorance for a disability or LTC for employers, service users/ providers, policy makers and health professionals is pointing them to information and resources where they can gain real experiences and understanding (Clement et al. 2011). This can be achieved through Information and Communications Technology (ICT) Social Media (SM).

2) Disease Sensitivity and Patient Experience “Think it's quite interesting that on applications for most openings have the applicant to tick various boxes, but think this is actually more unfair because employer can technically see more of the applicants’ background and thus there could be a selection bias in recruiting in work etc. and leading to indirect discrimination. Don't see the point in all the extra tick boxes”.

Across the world, more often than their non-disabled peers, people with disabilities do not receive the health care they need and have poorer health. Persons with disabilities tend to report more access to health care problems than persons without disabilities. These problems tend to be most common among those with the poorest health and those with most severe disabilities (Beatty & Dhont, 2001; Beatty et al., 2003; Coughlin, Long, & Kendall, 2002; Fouts, Andersen, & Hagglund, 2000; Iezzoni, Davis, Soukup, & O’Day, 2000; Kennedy and Erb, 2002; Long, Coughlin, & Kendall, 2002). According to Drainoni et al. (2006) it is imperative that healthcare policymakers, planners and providers understand and address the needs of people with disabilities as a distinct category of healthcare consumers. People with disabilities are more than twice as likely to find healthcare providers' skills and facilities inadequate; nearly three times more likely to be denied health care; and four times more likely to be treated badly. The WHO global disability action plan 2014-2021 seeks to address these disparities (WHO global disability action plan 2014-2021). The right to receive “the highest attainable standard of health without discrimination on the basis of disability” is enshrined in Article 25 of The UNCPD. Apart from being a right in itself, the right to health and work is also important in that it primes people with disabilities and LTCs to lead an active life of participation (Quinn and Degener 2002).

“I was told by my former manager the reason I didn’t get a promotion is because I was sick and they thought I wouldn’t handle it. After I informed them sternly about my rights, my ability and clarified the ins and outs of the discrimination act, I swiftly got a promotion n a pay rise... what cheek”.

Living with a Long-Term Condition (LTC) – A CKD Example •

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“I have found it hard in the past when looking for jobs”, “Having to work around the dialysis slots”. Lack of understanding and knowledge of what renal failure is and because physically you don't look unwell. “People think that you are over exaggerating and it's not always strangers, (it's family as well)”. “The best one is: Do you have to go in” “It's a bank holiday" or "it's Christmas”. “Do you still have to have dialysis" and that is after 18 years”.

Living with a Disability

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Discrimination is thus defined as distinguishing differences between treating someone as inferior based on their race, sex, health background, national origin, age or other characteristics (Sayce 2010). According to the UNCPD, discrimination is defined as:

Ignorance in Context •

Recruitment

The RPSG is a non-funded Facebook support group, which was a patient-led initiative established in (2009) by two long term renal patients and one long-time carer in Bristol City, England UK (Muhammad et al.2014). Unlike other renal Facebook groups, the RPSG is also research active. The RPSG has 10 members who form the administrative/ research team with representation from the UK, Europe, Australia and USA who are responsible for moderating the group. Today there are over 6000members globally supporting each other, with members providing insight on their experiences and shared-decision-making. Since the RPSG is mainly a Facebook platform, this lends itself well to raising CKD awareness, allowing members to share experiences and real-life stories (Muhammad et al.2014). All RPSG members were eligible to participate to post their comments relating to Discrimation and Ignorance. The RPSG has a disclaimer which relates to research consent and requires that members are aware that they are welcome to contribute in any data collection studies through the social media platform. If anyone feels uncomfortable contributing, they do not have to post comments. Clear information about the study was made available and member privacy and confidentiality was protected keeping comments anonymized. All existing RPSG members were able to access and contribute to the thread.

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CKD is an LTC that essentially has been described as the gradual, and usually permanent loss of kidney function over time. Early in the disease process, people with CKD often experience no symptoms and CKD has, for a long time, been an under-diagnosed disease (Black et al. 2010). The effect of CKD on an individual patient and the resulting societal burden that ensues from the long-term effects of the disease is attracting increasing scrutiny. These emerging data point to an urgent need for a global effort to highlight that CKD is preventable, its course is modifiable and its treatment can improve outcomes (Lewington et al. 2013). Analysis of patients with unidentified CKD suggests that their risk profile may be different to patients with identified CKD; this is an area that requires further research (Kearns et al. 2013).

“I think it varies in its nature from country to country and also from organisation to organisation as well as amongst individuals. My guess is that humans are essentially 'tribal' and have a natural tendency to favour 'their own' which, I suspect, is by definition discrimination”. “Worse treatment by insurance companies for something for which you bear no fault or responsibility is certainly a form of discrimination in my opinion”.

“I'm also manic depressive (bipolar) and have been very discriminated against for that. Even these days - people are just cleverer at doing it in subtle ways. I now work to combat discrimination against psychiatric patients - there's a long way to go!”

Assistive Technology (AT) There are a range of initiatives to highlight discrimination and ignorance through information leaflets, online peer support, one to one counselling and group education sessions (De Silva, 2011). Initiatives can be categorised along a continuum, with passive information provision about peoples conditions and ‘technical skills’ at one end of the scale with technology that aids to support behaviour change at the other end of the continuum (De Silva, 2011). How about Assistive Technology (AT) to preclude/ raise discrimination and ignorance awareness? A formal definition of AT, (at least in UK health/ social care), comes from a 2001 Kings Fund workshop:

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“Any product or service designed to enable independence for disabled and older people”. (Kings Fund Workshop, 2001) The passage for individuals with Disabilities Act (Tech Act) of 1988 has contributed to the increased attention on the role that AT can have in improving the functional needs of individuals with disabilities. Its passage and the establishment of technology-related projects greatly contributed to an increased public awareness in the use of AT by people with disabilities to improve their lives (Wallace et al. 1995). When the Tech Act was amended in 1994, it reflected a further redirection in policy, away from previous medical isolationist philosophies to philosophies focusing on AT for individuals with disabilities in the context of school, work and community settings (Wallace, et al. 1995). AT should also be acknowledged and understood by employers of individuals with disabilities, allowing healthier work environments. More awareness is needed (Mendelsohn et al. 2008; Edyburn, 2000; Edyburn, 2004; Edyburn, 2005).

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Conclusions

Discussion •

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A central concern to both national and international governments is trying to better understand how to effectively support patients with a disability and LTCs, like CKD, who have increasingly complex health and social care needs (Black et al. 2010). This has been driven by shifts in public policy (Staniszewska et al. 2012; Staniszewska et al. 2014). One recent example of perhaps indirect, yet ‘authoritative’ discrimination against people with disabilities specifically was in a recording made during a fringe meeting at the Conservative conference on 25th August 2014. The Minister for Welfare Reform, Lord Freud said:

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“Some disabled people could be paid £2 an hour, rather than the full rate of £6.50, if they wanted to work”. (The Independent, 2014).

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Lord Freud’s statement highlights obvious concern and this also informs the views that have to become more informed are not always those of other chronically ill, disabled, carers or relatives, but of academics, health researchers employers and politicians who lack awareness (Shakespeare and Watson 1997). What we hope is done differently? The main message here is that policy makers should be making more headway to support people with LTCs and disabilities and to preclude discrimination and ignorance at all levels.

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SM usage has grown exponentially with sites such as Facebook, Twitter, Instagram and others now representing 20% of time online and much more (Nielsenwire 2013). Not surprisingly people with disabilities and LTCs seek peer-to-peer support via SM which offers advantages over standard forms of engagement/ education with wide accessibility, immediacy and offers an opportunity for patient education (Xie B 2009), (Timimi 2012). The use of ICT and highlighting the challenges of living with a disability or LTC through SM is important for most patients because many want to be more involved to prompt issues like ignorance and discrimination which can be overwhelming (Coulter and Collins, 2011). All ICT and SM interfaces are potentially helpful and should be prompted to preclude discrimination and/ or ignorance. However, acquisition of knowledge alone is unlikely to be sufficient to motivate behaviour change (De Silva, 2011). Engagement helps highlight on-going challenges and where people feel pilloried. Awareness also needs to come from a bottom-up approach; this would also constitute patient and public involvement (PPI) for future initiatives and policy. SM platforms like Facebook, including BlogSpot and Twitter are also helpful; however, overall there needs to be a culture change. This needs to happen now because lifestyles are being affected. If policy makers are potentially discriminating at top down level then what chances do people have at bottom up. There is thus a need for a culture and mentality change.

References • • • • • • • • • • • • • • • • • • • •

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