We conduct qualitative and quantitative research to identify services users’ and carers’ needs, review current practice and identify the barriers and facilitators for change. This includes carrying out interviews, group discussions, surveys and literature reviews to inform policy and practice. Recent examples of our research projects include:

Reviewing the use of patient evidence during the assessment of health technologies for very rare conditions

We were asked by NICE to review the processes and procedures around developing and using evidence from patient organisations during assessment of health technologies for patients with very rare conditions. We produced a series of practical recommendations on how to make the process work more effectively for all stakeholders.

Obtaining patients’ views to inform national health policy

We were commissioned by the National Specialised Commissioning Team in the NHS to produce two patient submissions to inform the work of the Advisory Group for National Specialised Services (AGNSS). AGNSS took the evidence into consideration when developing their recommendations to ministers on whether to provide drug and services for people with extremely rare conditions.

Reviewing the evidence of the impact of patient and public involvement

We were commissioned by INVOLVE to carry out a review of the literature on the impact of PPI. The articles and reports have been summarised in an online database and a full report published by INVOLVE. We also produced a series of case studies illustrating the impact of involvement on social care research.

Setting research priorities

We were commissioned by the James Lind Alliance to carry out a review of UK clinical research funding organisations to find out whether and how they set research priorities, and if patients and/or the public are involved in the process.

Patient safety and risk

We ran workshops on behalf of The National Patient Safety Agency to listen to the experiences of service users and carers. Topics included hospital cleanliness, dispensing errors, MRSA and the National Clinical Assessment Service. We produced reports from the workshops to help the NHS learn from people’s experience. We also conducted qualitative research with health professionals to explore the reasons why patient deterioration can be detected but not acted upon.

Review of user involvement in health service policy and development

We developed a unit on user involvement as part of the Open University‘s course ‘towards a model of health policy and provision’.

Involving patients in developing organisational policy

We consulted people affected by MS and people affected by arthritis on behalf of The MS Society and Arthritis Care to help them develop their formal response to a Government consultation on Incapacity Benefit.

The history of RAGE – Radiotherapy Action Group Exposure

We researched and compiled the history of RAGE – a group of women who experienced long-term side effects as a result of radiotherapy for breast cancer in the late 70’s and early 80’s. RAGE still exists and continues to offer support to nearly 250 members. The project involved reviewing all the historical documents and interviewing a wide range of stakeholders, including RAGE members, doctors and lawyers.