Patient Involvement in Primary Care Research (PIP-CaRe)
The 3D trial was developed in consultation with the PIP-CaRe group which was formed for this purpose. The PIP-CaRe group consists of people who all have two or more long-term conditions and who can therefore advise on the needs and priorities of people in this situation who are managed in primary care.
There are currently 11 members of the group who contribute in important ways and to whom we are very grateful. We are always interested to hear from other people who may be interested in joining. For more information about what PIP-CaRe involves, please take a look at our PIP-CaRe leaflet (PDF, 479kB).
Watch members of PIP-CaRe discussing the need for the 3D approach here .
What does PIP-CaRe do?
The PIP-CaRe group meets with the 3D researchers at the University of Bristol roughly every 3 months. PIP-CaRe has contributed in a number of ways which include advising about the best way to organise care for people with several long-term conditions, commenting on trial documents to make sure they are easily understood and expressed in the right way, recommending ways of communicating with patients like them, helping to make a questionnaire more relevant, taking part in a focus group to develop an interview and focus group schedule for patients. Later a member of the group will help to interpret the results of the patient interviews that will take place during the process evaluation. Two members of the group are on the steering committee of the trial which oversees the conduct of the trial and makes sure it is appropriate and relevant to the people it will affect.
Advising the trial
PIP-CaRe has helped by advising about the problems that people with long-term conditions face with their care and how care could be improved. This helped in developing the new way of providing care that the trial is testing because we could check whether the ideas we had would meet the needs and priorities of people with multiple long-term conditions. The group emphasised how important it is for clinicians to properly listen to people with long-term conditions in their appointments. They have also advised about ways that receptionists can talk to people with long-term conditions about arranging the appointments they need.
Commenting on trial documents
The group has commented on information leaflets for people we are asking to consider taking part in the trial. The questionnaire that will be used to gain information from patients that will form the trial results has been discussed in the group to make sure the questions can be understood and will gather the right information. The layouts of information leaflets and questionnaires for participants have been changed after comments from the group about their readability.
Focus groups and interviews
The group is a useful way of trying out a focus group with patients to help to identify the topics that should be discussed. It can also be used to advise on what questions should be included in interviews. Interviews were also conducted with individual members of the group to help make a questionnaire about illness burden more relevant.
The trial management team needs to be sure that the research is relevant and appropriate to the people it will affect, so two members of the PIP-CaRe group are also on the Trial Steering Committee which meets about twice a year. They discuss how the trial is progressing and any concerns they may have about its conduct or acceptability. They will also help to discuss how the results might be made known and applied outside the trial.
Patient and public involvement is an important part of any trial that may affect the delivery of healthcare or treatment or management of health problems. There are several local organisations that support this involvement and a national organisation set up specifically for this purpose:
Contact: Cindy Mann
Centre for Academic Primary Care
University of Bristol,
Canynge Hall, 39 Whatley Road, Clifton, Bristol BS9 2PS
Tel: 0117 331 4583