An informal article in this week’s BMJ (2 August) looks at the WHO Essential Medicines List and how it is compiled and maintained.

‘WHO suggests that essential medicines should be available within functioning health systems at all times, in adequate amounts, in the appropriate doses, with assured quality, and at a price the individual and the community can afford.’

The authors recognise that the list, first introduced in 1977, “has led to global acceptance of essential medicines as a powerful means to promote health equity’.

‘The rules governing the process for inclusion on the list have changed substantially over time. Originally, the expert committee largely decided what should be included. But in 2002, in response to growing methodological concerns, a more systematic assessment of the evidence base was implemented.’

The authors identify 7 current problems with the current WHO procedure for inclusion of new medicines in the model list of essential medicines, and possible solutions to each:

1. Search strategy inconsistently reported, reasons for inclusion or exclusion of data not reported – Solution: A systematic search of the background evidence should be required and reported following the PRISMA or similar flowchart. The search strategy should be included in the application as an appendix

2. Target population, comparison groups, and outcomes of interest erratically reported – Solution: A PICO (population, intervention, comparisons, outcomes) format should be required. WHO could develop condition specific applications indicating the target population (new cases, non-responders, etc), the comparison groups (placebo, active comparators already included in the list, other active comparators), and the relevant outcomes (symptomatic, functional, short versus long term)

3. Quantitative summaries of overall treatment effect not systematically reported for each comparison and outcome – Solution: A tool such as GRADE should be required to report in a tabular format, for each outcome and comparison of interest, the number of studies and patients included, and the overall effect of the intervention

4. Quality of evidence erratically reported – Solution: A tool such as GRADE should be required to report, for each outcome and comparison of interest, the quality of the evidence base

5. Considerations not related to the evidence base inconsistently reported – Solution: WHO application form should include a box for considerations dealing with preferences, values, feasibility issues, and resource use

6. Conflicts of interest not clearly reported – Solution: WHO application form should include a box for reporting potential economic or intellectual competing interests

7. WHO expert committee narratively reports reasons for accepting or rejecting a medicine – Solution: WHO should develop a reporting template where judgments on the various aspects of the application are consistently and transparently reported.

Here is the citation: Decisions on WHO’s essential medicines need more scrutiny

BMJ 2014; 349 doi: http://dx.doi.org/10.1136/bmj.g4798 (Published 31 July 2014)

Corrado Barbui & Marianna Purgato.

The full text is restricted-access.

The authors do not comment on child health, for which WHO produces a separate Model List of Essential Medicines for Children (2013). WHO also co-publishes The Interagency List of Essential Medicines for Reproductive Health (2006).

http://www.who.int/medicines/publications/essentialmedicines/en/

Best wishes,

Neil

Let’s build a future where people are no longer dying for lack of healthcare knowledge: Join HIFA www.hifa2015.org

There is increasing interest in producing versions of clinical guidelines for the public, patients and carers. However, this systematic review found that ‘Awareness of guidelines is generally low and guideline producers cannot assume that the public has a more positive perception of their material than of alternative sources of health information’.

The authors found 26 relevant studies (none of which were in low- and middle-income countries, reflecting the lack of research in those countries)

Below is the citation, abstract and selected extracts. The complete article is open access and is available as a provisional PDF here:

http://www.biomedcentral.com/content/pdf/1472-6963-14-321.pdf

CITATION: Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses

Kirsty Loudon, Nancy Santesso, Margaret Callaghan, Judith Thornton, Jenny Harbour, Karen Graham, Robin Harbour, Ilkka Kunnamo, Helena Liira, Emma McFarlane, Karen Ritchie and Shaun Treweek

BMC Health Services Research 2014, 14:321  doi:10.1186/1472-6963-14-321

Published: 27 July 2014 [Open Access]

ABSTRACT (provisional)

Background: Clinical practice guidelines are typically written for healthcare providers but there is increasing interest in producing versions for the public, patients and carers. The main objective of this review is to identify and synthesise evidence of the public’s attitudes towards clinical practice guidelines and evidence-based recommendations written for providers or the public, together with their awareness of guidelines.

Methods: We included quantitative and qualitative studies of any design reporting on public, patient (and their carers) attitudes and awareness of guidelines written for providers or patients/public. We searched electronic databases including MEDLINE, PSYCHINFO, ERIC, ASSIA and the Cochrane Library from 2000 to 2012. We also searched relevant websites, reviewed citations and contacted experts in the field. At least two authors independently screened, abstracted data and assessed the quality of studies. We conducted a thematic analysis of first and second order themes and performed a separate narrative synthesis of patient and public awareness of guidelines.

Results: We reviewed 5415 records and included 26 studies (10 qualitative studies, 13 cross sectional and 3 randomised controlled trials) involving 24 887 individuals. Studies were mostly good to fair quality. The thematic analysis resulted in four overarching themes: Applicability of guidelines; Purpose of guidelines for patient; Purpose of guidelines for health care system and physician; and Properties of guidelines. Overall, participants had mixed attitudes towards guidelines; some participants found them empowering but many saw them as a way of rationing care. Patients were also concerned that the information may not apply to their own health care situations. Awareness of guidelines ranged from 0-79%, with greater awareness in participants surveyed on national guideline websites.

Conclusion: There are many factors, not only formatting, that may affect the uptake and use of guideline-derived material by the public. Producers need to make clear how the information is relevant to the reader and how it can be used to make healthcare improvements although there were problems with data quality. Awareness of guidelines is generally low and guideline producers cannot assume that the public has a more positive perception of their material than of alternative sources of health information.

EXTRACTS (selected by Neil PW)

Example: ‘Patients’ perception of clinical guidelines was also influenced by whether they viewed menstrual disorders as being unique to the individual patient and requiring personal treatment or as a process in which women experience similar symptoms requiring similar treatment.’

‘Patients and the public did not always see guidelines in a positive light; we found that many consider guidelines as a way to ration and deny access to care. Guideline producers may need to overcome this barrier directly in the text of patient versions – perhaps by providing the evidence behind a recommendation to show where the recommendation came from, or to simply be explicit in saying that the aim of guidelines is not to ration care but to provide care based on the best evidence currently available.’

‘When it came to participants’ perceptions of [the guideline], they expressed a dislike for the cartoon-like format, which led some to actually question whether adults were the target audience and if the guide would be taken seriously.’

—

Let’s build a future where people are no longer dying for lack of healthcare knowledge: Join HIFA www.hifa2015.org

The Communication Initiative provides a summary of a major review: “What HIV Programs Work for Adolescent Girls?” The authors look at several interventions, including sex education (see below). The full text is available here:

http://www.comminit.com/hivaids-youngpeople/content/what-hiv-programs-work-adolescent-girls

‘Providing comprehensive sex education: “[B]efore the onset of sexual activity [providing sex education] may be effective in preventing transmission of HIV by increasing age at first sex and for those who are sexually active, increasing condom use, testing, and reducing the number of sexual partners….The quality of sexuality education is as important as its provision; fidelity to successful components must be maintained. Training for teachers to conduct age-appropriate participatory sexuality education, which can improve students’ knowledge and skills, is essential.” The research recommends combining education with accessible and youth-friendly health services.’

Let’s build a future where people are no longer dying for lack of healthcare knowledge: Join HIFA www.hifa2015.org

https://class.stanford.edu/courses/Education/OpenKnowledge/Fall2014/about

Video: https://www.youtube.com/watch?v=Ax02qLF-jEo

Open source, open science, open data, open access, open education, open learning — This fall Stanford faculty and librarians are working with international partners to offer the innovative free  (no-cost)  course Open Knowledge: Changing the Global Course of Learning on the OpenEdX platform (https://class.stanford.edu/courses/Education/OpenKnowledge/Fall2014/about )). The course provides an introduction to the important concept of openness from a variety of perspectives, including library and information studies, education, publishing, economics, politics, and more. Open Knowledge is international and multi-institutional, bringing together instructors and students from Stanford University (USA), Fordham University (USA), University of British Columbia (Canada), Simon Frasier University (Canada), the Kwame Nkrumah University of Science and Technology (Ghana), the Universidad Autónoma del Estado de México (Mexico), and the rest of the world.

Learn more about the concept of “open”, develop your digital literacy skills, and connect with peers from around the world.

For more information and to register: (https://class.stanford.edu/courses/Education/OpenKnowledge/Fall2014/about)

Lauren A Maggio, MS (LIS), MA

Lecturer, Department of Medicine, Director of Research and Instruction, Lane Medical Library & Knowledge Management Center

Stanford University Medical Center 300 Pasteur Drive, L109, Stanford, CA 94305-5123

lmaggio@stanford.edu / @laurenmaggio

Could you please share this easy-to-digest message out to the Nigerian public through your various means? It is very well done and provides people with the information they require to stop the spread of Ebola. And in this case Prevention is MUCH MUCH better than cure. Many thanks E

http://ebolafacts.com/   https://twitter.com/ebolafacts

Egbe Osifo-Dawodu MD MBA MSc MRCP, Founding Partner, Anadach Group

eosifodawodu@anadach.com http://www.anadach.com http://twitter.com/anadach

WITH the report deadline of November next year in its sights, the Competition Commission has published the final framework through which it will conduct its inquiry into the cost of private healthcare in South Africa. The commission announced its intention to investigate the sector last year, mainly because of concerns that prices for private healthcare were at levels only a minority of South Africans can afford. Prices across various segments were rising above headline inflation…..more

The International AIDS Society announced in Melbourne last week that the biennial AIDS conference will return to Durban in 2016. But this time, the circumstances in the country are significantly different than 2000. Last year, only around 7 600 babies were infected with HIV by their mothers, in comparison to 56 000 babies in 2003…..more

 There are a number of South Africans living in the US who are thriving, Brand SA country manager Simon Barber said on Friday. “There are about 80 to 85,000 South African born people who are permanently living in the United States now,” he said in Washington…..1 2

In need of holiday reading? Why not look at some of the resources on WONCA’s website? It includes

• A-Z topic listing
• Journals of interest
• PEARLS
• Databases (search the literature)
• Evidence & guidelines
• Downloadable Apps
• WONCA Publications

See here

WONCA members around the world have expressed their shock and sadness at the terrible loss of so many lives on Malaysian Airlines flight 17. Another tragic day in world history. On your behalf I have expressed our condolences to our friends and colleagues in affected nations, especially the Netherlands and Malaysia…..more

Are you wanting to increase your knowledge about how to do Implementation Research? Well, there are 2 excellent resources available to help you out.

1.  Implementation Research in Health:  A Practical Guide David H. Peters, Nhan T. Tran, Taghreed Adam Alliance for Health Policy and Systems Research and WHO, 2013

http://who.int/alliance-hpsr/alliancehpsr_irpguide.pdf

2.  Implementation Research :  A Synthesis of the Literature, Fixsen, D. L., Naoom, S. F., Blase, K. A., Friedman, R. M. and Wallace, F University of South Florida, 2005

http://nirn.fpg.unc.edu/resources/implementation-research-synthesis-literature

http://nirn.fpg.unc.edu/sites/nirn.fpg.unc.edu/files/imce/images/nirn-monogrpah-cover-lg.png

Over the past decade, the science related to developing and identifying “evidence-based practices and programs” has improved- however the science related to implementing these programs with fidelity and good outcomes for consumers lag far behind. To this end, our intent is to describe the current state of the science of implementation, and identify what it will take to transmit innovative programs and practices to mental health, social services, juvenile justice, education, early childhood education, employment services, and substance abuse prevention and treatment. This monograph summarizes findings from the review of the research literature on implementation and proposes frameworks for understanding effective implementation processes. The results of this literature review and synthesis confirm that systematic implementation practices are essential to any national attempt to use the products of science – such as evidence-based programs – to improve the lives of its citizens.

For all list information and functions, see: http://lists.coregroup.org/lists/info/cgcommunity

(With thanks to Karen LeBan and the CORE Group cgcommunity) [Forwarded from CORE Group] Courtesy HIFA2015

I would like to add another valuable resource for implementation research. It is the Implementation Research Toolkit, which was designed to help people learn a standard process that would lead to results that could be compared across regions and countries. It is designed to help identify system bottlenecks and the stakeholders to be involved, formulate appropriate research questions, conduct the research and develop a plan for implementing the study results.

TDR, the Special Programme for Research and Training in Tropical Diseases, led this project. Over 200 researchers, academics, disease control programme managers, policy-makers, health administrators, communication scientists and journalists contributed to test and evaluate the toolkit. Major funding was provided by USAID, with additional support from the Implementation Research Platform at the World Health Organization.

Full information, including the toolkit, a facilitator’s guide, and a video are available free of charge here: http://www.who.int/tdr/publications/topics/ir-toolkit/en/

Who can use this toolkit?

• – Health care service providers
• – Programme staff
• – Researchers
• – Decision-makers
• – Finance and administration officers
• – Media

Learn how to:

• – Identify barriers to implementation and formulate the research question
• – Make your case for funding
• – Set up a study design and appropriate methodologies
• – Plan the project (budget, personnel, timelines, monitoring and evaluation)
• – Collect, analyse and present research information
• – Develop a dissemination plan
• – Monitor and evaluate your research project

Jamie Guth

The Patient Information Forum (PiF) is the UK association for professionals that work in the field of consumer health information. (I would be interested to learn of other similar associations, especially in low- and middle-income countries – indeed, is there a global “Patient Information Forum”?). The website is http://www.pifonline.org.uk/ PiF is creating ‘the UK’s first practical, producer-led guidance and best practice on creating great health information resources…’ The report is available here: http://www.pifonline.org.uk/wp-content/uploads/2014/06/Report-on-engagement-events-creating-health-information-that-really-works-June-2014.pdf ‘… a number of issues appeared consistently across all topics and arguably form a set of overarching principles for creating consistently good health information. These principles include (this list is not exhaustive):

• 1. Have a clear purpose for the information and share this with all involved
• 2. Talk to and involve potential users from the start and throughout: ‘follow the information user at all stages’
• 3. Less is more…keep information simple and clear
• 4. Personalise information wherever possible; one size does not fit all
• 5. Make sure information works in the ‘real world’ for all involved or affected
• 6. Check what’s already available and think outside your organisation: link to and share good work, knowledge and expertise across professional boundaries and across the professional/patient/public boundary
• 7. Information shouldn’t stand alone. It needs support, so it can become knowledge, education and empowerment.’

Best wishes, Neil