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Who decides which research questions about contraception should be studied?
Date: 15 Nov 2018
Author: Professor Judith Stephenson
Judith Stephenson is the Margaret Pyke Professor of Sexual & Reproductive Health at UCL, Programme Director for Maternal Health, UCL Partners (Academic Health Science Partnership) and Honorary Consultant in Women's Health at UCLH. She is also a member of the steering group for the Priority Setting Partnership in Contraceptive Care (Contraception PSP). In this month's eFeature Professor Stephenson presents the top 10 research priorities in contraception and guides us through the work and launch of the final report from the Contraception PSP which places contraceptive service users and frontline clinicians at the centre of the research priority selection process.
There are not enough resources to study every research question that we might be curious about. So how do some questions get picked for research while others do not? Who decides?
Traditionally, many research agendas have effectively been drawn up by professional researchers who devote their time and skills to investigating topics of personal interest. Sometimes research is commissioned in connection with national health strategies such as the Teenage Pregnancy Strategy in England whose aims included improving access to contraception for young people. Quite often the research agenda is set by the pharmaceutical companies that produce and market contraceptive methods. Questions about contraceptive care that are of particular interest to patients and frontline clinicians are less often in the limelight. Until now.
This month sees the launch of the final report of a Priority Setting Partnership in Contraceptive Care. The partners in this are contraceptive service users, members of the public and frontline clinicians. The priorities were set by a robust process that involved conducting online surveys to elicit the questions that matter most to patients and contraceptive care providers; weeding out questions that are not suitable for research, such as “How do I know which contraceptive pill my girlfriend should use” or “I am interested in finding out more about sterilisation”; checking whether someone has already studied and answered each question (by trawling through large databases and examining research publications) and then bringing the partners together in the same room to discuss and finally rank the top 10 priority questions for contraceptive research.
The whole process took about 18 months. It was steered by a group of patient and service user representatives and healthcare professionals involved in the delivery of contraceptive care. Over 200 people proposed 582 questions relating to accessing contraception, getting information about choosing a suitable method, the benefits, risks or side effects of different types of contraception, and starting, continuing, switching or stopping types of contraception.
Questions that were very similar were combined and those that had already been answered were sifted out leaving a long list of 57 questions which was whittled down to 29 questions after a second online survey asked service users and healthcare providers to rank the questions. At the final workshop, attended by 12 service users and 12 care providers, the short list of 29 questions was reduced to the top 10 through a series of small and large group discussion and ranking exercises.
"This Priority Setting Partnership represents the first systematic approach to discover, from the people most directly involved in contraceptive care, which questions the research community should investigate on their behalf." - Professor Judith Stephenson
The Top 10 Research Priorities for Contraceptive Care
1. Which interventions (decision support aids, ease of access, motivational interviewing) increase uptake and continuation of effective contraception including long-acting methods (implants, injections and intrauterine contraceptives)?
2. What is the risk of side effects (vaginal bleeding, mood, weight gain, libido) with hormonal contraception (pills, patches, rings, implants, injections and hormonal intrauterine system)?
3. What are the long term effects of using contraception (pills, patches, rings, injections, implants, intrauterine) on fertility, cancer and miscarriage?
4. What models of care increase access and support decision-making for vulnerable groups (such as young people, people who don't speak or read English)?
5. Which interventions are safe and effective for women who have irregular bleeding on long-acting hormonal contraception?
6. Does pharmacy provision of contraceptive services increase uptake and/or continuation of contraception?
7. What are the risks or benefits to using combined hormonal contraception (pill, patch or ring) continuously to stop or reduce periods?
8. What factors (advice from friends, family, professionals, beliefs, experience) influence women making decisions about contraception?
9. Are there tests or factors such as age that can reliably identify women who no longer require contraception around the menopause (including women using methods which can stop periods such as implants, hormonal coils, pills)?
10. Are there effective new methods of hormonal contraception available for men?
The process was supported by the Faculty of Sexual & Reproductive Healthcare (FSRH) and the James Lind Alliance which developed the original methodology. The James Lind Alliance has helped to generate over 50 Priority Setting Partnerships across different fields of healthcare. Confidence in the methodology and an increasing desire to commission research questions proposed by individual patients, care providers or members of the public means that the National Institute for Health Research (NIHR) is currently considering six of these contraceptive research questions for future commissioning. FSRH, through its SRH Clinical Studies Group, will continue to try to influence research funders to develop the priorities into research questions and monitor the impact of the priority setting process.
Collaboration, Choice, Care: The Contraception Priority Setting Partnership final report is now available here.