The word ‘research’ can mean many different things to different people and at first sight the world of research can appear bewildering to new researchers. However, nearly everyone makes use of ‘research skills’ in everyday life.
For instance, many of us have used a public library or the Internet to find out information; many of us are used to ‘shopping around’ and asking sales assistants about different products to see which is best. Health service research simply does these things in a more organised and technical way. One thing that all researchers would agree is that research is about creating new knowledge. In health care, this knowledge is most often used to:
- Find out about how well care or treatment is working
- Plan changes to treatments or care
- Plan how ill-health might be prevented.
Training is important in preparing any researcher to undertake research as it:
- Builds researcher confidence in collecting quality data.
- Meets the ethical requirements from the Research Ethics Committee
- Helps focus the researchers on the research topic.
Barriers to Training
Overcome Barriers to Training
|Coming to the university can make people nervous.||Present the university as a ‘community resource’. Having access to the library and an honorary contract helps with this.|
|People often think research is something other people do.||Instil that everyone is an expert on something. Also acknowledge that we all have research skills.|
|Their own experience of being researched ‘on’ may not have been a positive one.||Value people through providing a quality course. Involve the topic experts in the area, representing both the Trust and University.|
|They may lack confidence around reading and writing.||Build skills with creative writing sessions. This includes supporting people to learn how to learn.|
|People may be concerned about having to work with others.||Support each other through a buddy system and mentors.|
We developed a short course designed to help service users and carers gain the skills and knowledge needed to be able to take an active and meaningful part in research projects that concern them. We recruited 25 interested people to the course through local mental health service user and carer networks and events. The course was funded by the National Institute for Health Research and recognised that the students are the people who use the services; they have (expert) views on how services could be made better; from their experiences, they understand what particular health care issues mean for day-to-day life better than most professionals, and they pay for the services that professionals provide. Also many people who use services feel more comfortable talking about their experiences/getting involved in research that is being led by people who have also had an experience of using similar health care services. It is therefore in the best interest of the NHS, service providers, service users and carers, that their voices and those of other service users and carers are heard. This situation is best summarised by the phrase:
‘Nothing about us, without us!’
As this was a funded University course with the potential to gain accreditation we considered it important that students commit to it in a meaningful way. We therefore derived a series of rules and agreements that form a learning contract between the course and the student. The purpose of these ground rules was to help build up a mutually supportive environment within the training group. This has been found to be very helpful in enabling people to talk about and learn from their own experiences.
We devised the following agreement between students and staff:
Commitment from student:
Those attending the course should consider the following:
- Confidentiality of information – it is important that members do not refer to anything of a personal nature that anyone has said, outside of the training sessions or in any other circumstances.
- Respect the autonomy of others – each member of the course has the absolute right to decide what they want to do or say in the group. We do ask each member not to: pressure anyone to do anything they do not want to and probe or ask people to reveal more than they choose to.
- Speak for yourself – “I” when that is what you mean, not “you”, “we”, “one” etc. “I would like to…” not “We ought to …” or “It would be nice if …”;”I always wonder how someone will react” not “You always wonder ….”.
- No put-downs – avoid criticising or expressing any judgements or negative opinions about the other people – or yourself.
- Only one person to speak at a time – giving full attention to whoever is speaking. Avoid interrupting and speaking out of turn in a round.
- Mobile phones and pagers must be switched off during sessions.
Commitment from staff:
Those running the training course will provide a positive learning environment:
- All those involved in the training should have a willingness to learn from one another.
- All involved will act with respect to each other.
- All communication should be universal and transparent.
- The overall intention of research is to improve the lives of both mental health service users and carers.
- There is a commitment by all to be honest, share power and work in a flexible and responsive way.
- In the training all involved will act with integrity and responsibility towards any research participants.
- Throughout the training a clear consideration of students’ well being, anonymity, privacy and confidentiality will take place.
- Ultimately within the course the pursuit of freedom of thought, expression and anti discrimination will be upheld.
The original content of course was designed by the steering group but it evolved under the influence of the research group itself. We believe that the learning took place at a level and practical detail beyond that required by PhD students.