By Sharin Goodchild and Dave Green

Context

Patient safety is a matter of international concern. All healthcare professionals work hard to protect patients from harm, however accidents and mistakes still occur.

The programme of research we are involved in, under the auspices of the Yorkshire Quality and Safety Research (YQSR) Group, focuses on involving patients in aspects of their own safety. There has been little work done in this area that has included patients and healthcare professionals in the development of initiatives to support a patient role in improving patient safety, so this is ground-breaking research.

How the study is set up

The study is divided into four projects:

• Project one will develop a patient measure of organisational safety allowing patients to record safety concerns.
• Project two is developing a patient-led safety reporting tool.
• Project three is developing interventions to support patients working collaboratively with healthcare professionals to improve safety and reduce the risk of harm.
• Project four will evaluate a patient-based training programme using patient stories to improve awareness among healthcare professionals.

Organisation and issues

The programme has embedded a patient panel into its overall steering process. This is made up of eight panel members and two co-chairs. Two patient panel members are attached to each of the four projects, with six in the Bradford / Leeds area and two in the Newcastle / Sunderland area. Our own work involves the Newcastle contribution to the research project under Professor Richard Thomson of the Institute of Health and Society, Newcastle University.

The geographical spread of the programme has presented problems in communication. A newsletter and a website have gone some way towards resolving this, although we miss the frequent social contact where, in our experience, sandwiches and copious amounts of caffeine can solve most problems.

In Newcastle, the potential for misunderstanding over roles and status was an issue. We were not part of the initial planning and were unsure of our roles so we would like to have been involved earlier.

Reflections

We bring to the project our experience in industry and the public sector as well an interest in research and our work as hospital volunteers. This was our first research project and the learning curve on both sides was steep. The entry into a new world of methodology and terminology necessitated having to think oneself into the ‘research mindset’, which presented a real challenge.

We all brought different skill and experience sets to the project. The influence of a cross section of people with diverse views leads to robust research, although it is necessary at times to detach oneself from personal experience to see the bigger picture. This requires subtle negotiations, carried out with respect and humour, to ensure that skills and experiences are identified and absorbed into the team. These negotiations are the ‘make or break’ point for any research team. The most effective team has a mixture of skills and experience and works together to further the objectives of the study. There is a fine balance between tokenism and real patient participation. At Newcastle we feel we got this balance right.

Where we are now

We wrote earlier of thinking oneself into the ‘research mindset’. In fact this is no different from the qualities needed to participate in any new enterprise. Our involvement in recruiting patients for the study, analysing focus group scripts, attending conferences and engaging in extensive background reading emphasises the need for professionalism, discipline and commitment and, oh yes, a sense of humour. For us, participation has opened up new horizons. We’ve been invited on several occasions to give presentations on our experiences and we are exploring our own project, which will feed back into the main study. This will include putting our experiences and the lessons learned into user-friendly terms. We are now aware of the vital role patient-participants play in research and the enormity of the task involved in making partnerships work well. We’ve come a long way from those very uncertain, tentative beginnings.

www.ncl.ac.uk/ihs/research/project/3852

www.bradfordresearch.nhs.uk/our-research/patient-safety/research-projects-1/

Sharin Goodchild and Dave Green are Patient and Public Involvement (PPI) panel members at the Institute of Health and Society, Newcastle University

Contact: Dave Green

Email: davegreen06@googlemail.com