site.btaPatient Organizations Feel Left Out of Healthcare Decisions - Poll

Nearly 90% of patient organizations do not feel adequately represented in healthcare decision-making, according to data from an online poll of 50 respondents, 18 of which are active patient organizations, Deputy Chair of National Alliance Rare Diseases Bulgaria Lidiya Vitanova told reporters here on Tuesday.

Vitanova participated in a media meeting on the topic "Why inadequate regulation in the patient sector leads to missed public benefits?". All respondents answered affirmatively when asked if they would like to be actively involved in healthcare decision-making. When asked if the regulatory framework governing patient organizations needs change, 83.3% responded affirmatively, while 11% said they did not know enough to make an assessment. Vitanova noted that this level of unfamiliarity suggests the framework should be more accessible and widely known.

Lawyer Kalina Mihaylova who has reviewed the regulatory framework governing patient representation in Bulgaria said that healthcare is regulated by two or three main laws and an extensive body of secondary legislation. Mihaylova added that there are no clear requirements on how patient rights are regulated and protected.

"One of the major issues in our society is trust", said Alexander Simidchiev, Chair of the Parliamentary Health Committee. "In healthcare, due to a lack of trust, we have polarized the discussion between those trying to do something and those affected by it – both sides are increasingly clashing on social media", Simidchiev commented.

September 17 is World Patient Safety Day, with this year's theme centred on diagnostics.

"On average, diagnostic errors occur in about 16% of cases. For individuals with rare diseases, obtaining an accurate diagnosis often requires consultations with three to ten specialists", said co-founder of the National Alliance Rare Diseases Bulgaria Petia Stratieva.