The Project

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Being actively involved in other forms of clinical research

The PatientPartner project’s main focus is on the involvement of patient organisations in clinical trials. In this question we asked our respondents to let us know if they were involved in any other ways in clinical research studies which they did not consider to be clinical trials.

Is (Has) your patient organisation (been) involved in other forms of clinical research?

Overall 31% of all respondents stated that they were involved in other forms of clinical research.

Starting at the level of being a research subject, patient organisations described their active involvement in other genres of clinical research e.g. research studies on the quality of life; service research; care research and social research.

At the level of being involved as an advisor, a number of patient organisations described being involved in the agenda setting of research committees/foundations
Some patient organisations were themselves involved in advising other stakeholders how to involve patients in research (UK).

The only additional description of being a reviewer in research was in reviewing emergency sheets for hospitals, which is more along the lines of general care.

When it comes down to being a co-researcher, two of the respondents described that they were involved either as a co-applicant for a research grant or a pre-clinical research study, in which case a member of the patient organisations was involved as a lay advisor

There were several other forms of clinical research in which  patient organisations said to be the driving force.
Some examples:
- “We focused the public attention on our condition and the need for research” e.g.  by organising an annual symposium to bring forward the issued concerning the condition.
- “We were the driving force behind a non drug study”.

 Finally we asked our respondents if they were involved in other forms of clinical research in any other way than described in the levels of patient involvement in clinical trials.
Agenda setting was one of the most frequently named other ways e.g.
- “ We recruited patients to inform the research priorities of an University.
- “We try and influence the research portfolio”.
- “We try to drive the research agenda by maintaining close contact with patients, clinical care teams and researchers”.

Further examples:
- Being involved in translational and innovative research;
- Producing leaflets on patients rights e.g. for in clinical trials
- Having a patient representative in a research network
- Requesting for projects through tenders.
- Promoting research projects


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