Patients’ roles and rights in research

29 October, 2018

Citation and extracts of an intereesting letter in this week's print BMJ.

CITATION: Patients’ roles in research: where is Africa?

BMJ 2018; 363 doi: https://doi.org/10.1136/bmj.k4427 (Published 25 October 2018)

Cite this as: BMJ 2018;363:k4427

James Ditai, PhD fellow, Andrew Weeks, professor of international maternal health

Contact: j.ditai@safri.ac.ug

'Patients’ roles and rights in research are vital. In Africa, the challenges are greater than in other parts of the world...

'Patient information sheets used in the informed consent process rarely have patient input leading to long and complex forms full of legal jargon, which can hide important information. This is akin to the “small print” used by banks and computer companies, which is rarely read before signing or clicking “I agree.” The public would be better served by independent advisers providing short summaries of the key controversial sections.

'Our ongoing project assesses public involvement in women’s health research in Uganda. Our preliminary findings show that women fare better with short, pictorial information on a flip chart than with the standard 6-7 pages of participant information. We are conducting a randomised trial to show this. We are also working with the James Lind Alliance to develop a context specific approach to understanding important research questions with women and the public in Uganda. We would welcome the chance to work with The BMJ in progressing this important topic in Africa.'

Full response at: https://www.bmj.com/content/362/bmj.k3193/rr-7

Best wishes, Neil

Coordinator, HIFA Project on Information for Citizens, Parents and Children:

http://www.hifa.org/projects/citizens-parents-and-children

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 18,000 members in 177 countries, interacting on five global forums in three languages. He also currently chairs the Dgroups Foundation (www.dgroups.info), which supports 800 communities of practice on international development, health and social justice. Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil@hifa.org