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Today is Patient Solidarity Day 2018

December 7th, 2018 · 3 Comments

Sharecar Ghana releases online survey report in partnership with International Alliance of Patients’ Organizations  

Today is being observed across the globe as Patient Solidarity Day. This year, the International Alliance of Patient Organizations (IAPO) members, patients, healthcare organizations, policy-makers, academia, institutions, industry and other stakeholders are calling for safe  medications and healthcare for all. Patient Safety is a critical global public health issue, which plays a crucial role in enabling and supporting health systems achieve sustainable and effective Universal Health Coverage (UHC) – one of the Sustainable Development Goals (SDGs).

Every patient has a right to receive medication and healthcare that are safe, effective, and legitimate. Chance should not be a factor in whether or not one receives safe healthcare and quality medicines.

In the run up to Patient Solidarity Day (PSD) 2018, Sharecare Ghana in partnership with IAPO embarked on an online survey to engage the general public on its knowledge of autoimmune and neurological conditions and to also champion the cause of the ‘fight the fakes’ campaign against fake medications in the system.

This survey was conducted from 23rd November 2018 to 3rd December 2018 (10 day survey). The questionnaire was shared via bulk email, WhatsApp and on Sharecare Ghana’s social media platforms.

The survey was divided into two parts. The first part dealt with autoimmune and neurological conditions knowledge and prevalence, while the second part dealt with awareness of fake drugs and their danger.

Bio Data

Respondents were all Ghanaian; 65% were female and 35% male. The age range was as follows: 5% between 13-19 years, 25% between 20-29 years, 30% between 30-39years, 5% between 40-49years, 15% between 50-59 years and 20% over 60 year. Respondents were from three out of the 10 regions in Ghana, with 90% from the Greater Accra Region, 5% from the Eastern Region and 5% from the Central Region.

Awareness of Autoimmune and Neurological conditions

Data gathered from this section revealed that 35% of rrespondents have an autoimmune / neurological condition, 25% are friends of persons with autoimmune / neurological conditions, 10% are caregivers and 30% are relatives of persons with autoimmune / neurological conditions. With the conditions known to these persons 30% had knowledge of Rhematoid Arthritis and Spondylosis, 25% knew Muscular Dystrophy, Lupus and Type 1 Diabetes, 10% knew of Motor Sensory Neuropathy  and Thyriod conditions ,Vasculitis, Neuromyelitis optica (Devic’s Syndrome), Multiple Sclerosis, Morfan each had 5%.  75% of patients have had their conditions diagnosed and 25% have not been diagnosed.  65% said their condition is being managed with diet, 60% by medication and 55% by physiotherapy. One participant says: “I do things that keep me calm and I eat right”.

As to  whether respondents belong to an organization or support group, 75% said yes while 25% said they do not belong to an organization or suppoprt group. A follow up question revealed that 70.6% of respondents  are members of patient support groups and 29.6% are volunteers.

Respondents were given a list of issues to select which do not currently receive the attention they deserve from national decision makers.

The implementation of existing laws on diseases and disabilities by the authorities had 75%,

80% for increasing availability, access and funding for early diagnosis,
75% for improving access to treatment (availability),
85% for lowering cost of treatment (affordability),
55% for improving access to new treatment options and clinical trials,
65% for training health care providers,
20% for addressing end of life concerns and palliative care,
45% for improving access to psychological care,
50% for providing integrated care (combined medical, psychological, and social support),
30% for offering disease management education and counselling for self-care skills,
30% for the creation of standards and guidelines to link clinical and community support programs.

Awareness of counterfeit drugs and their danger

This section started by asking  10respondents what instinctively comes to mind when they hear the word counterfeit or counterfeiting. 60% said money, 30% medicine, and 10% said electronics. Moving on, 85% knew about the existence of counterfeit medications and 15% did not. 5% could identify counterfeit drugs, 60% could not and 35% had no idea what counterfeit drugs are.

40% do not have information about being exposed to counterfeit drugs, 30% have little information and 30% have some information about being exposed to counterfeit drugs.

95% of those who took the survey believe counterfeit drugs are definitely dangerous and 5% said they can be dangerous.

It is no surprise that 55% of respondents believe counterfeit drugs can be encountered when travelling as tackling  this has been an ongoing challenge for the Food and Drugs Authority. 15% of respondents said they could encounter counterfeit drugs via official distribution, 15% from other services, 10% online and 5% had no idea. 65% think that there may be counterfeit drugs but are not sure, 20% believe there are undoubtedly counterfeit medicines and everyone knows it, while 15% do not know. 95% have never contacted the authorities on counterfeit drugs while only 5% have.

If any conclusions may be drawn from the data, the survey clearly reveals that there is a fair idea of knowledge about autoimmune / neurological conditions as well as the existence of counterfeit drugs and their danger. Sharecare Ghana wishes everyone a happy Patient Solidarity Day celebration, a Merry Christmas and a Happy New Year in advance.

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3 responses so far ↓

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