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Patient, carer and public information

NHS Research Scotland is committed to actively involving patients, those who care for them and the public in all aspects of the research process, including shaping future research activity.

The Chief Scientist Office of the Scottish Government Public Engagement Group

The Chief Scientist Office (CSO) currently has a group of volunteers (members of the Public) who form the CSO Public Engagement Group. The Group is co-chaired by Miss Barbara Lamb and the Head of CSO.

The Group membership consists of 11 volunteers who come from a variety of backgrounds but all have an interest in the NHS and Health Research in Scotland.

The main role of the Group is to provide a lay perspective on the activities of the CSO to ensure that the public view is taken into account in relevant policy and funding issues. Read more

SHARE, the Scottish Health Research Register

An NHS Research Scotland initiative created to establish a register of people, aged 11 and over, interested in participating in health research and who agree to allow SHARE to use the coded data in their various NHS computer records to check whether they might be suitable for health research studies. This access can be incredibly useful when it comes to developing new treatments and cures for a wide variety of health conditions. Read more

UK Standards for Patient and Public Involvement (PPI)

The UK Standards for Public Involvement provide clear, concise statements of effective public involvement against which improvement can be assessed.

BOFAS/James Lind Alliance Priority Setting Partnership

The British Orthopaedic Foot & Ankle Society are working with the James Lind Alliance to review what the most important questions for future research on foot and ankle conditions to answer are.

Have your say by completing the Final Questions for BOFAS James Lind Alliance Survey Foot and Ankle Survey.

Rare Disease Day 2021: Shining a Light On a Rare Bone Disease, XLH

Rare Disease Day advertisement graphic

On Tuesday 2 March 201, people living with XLH, a rare genetic bone disease, as well as scientists, staff and students from across the Institute of Genetics and Molecular Medicine at Edinburgh University heard about exciting new developments in research into XLH from Professor Stuart Ralston and Ryan Frew, who has XLH, described how his life has been transformed by a new treatment.

Rare Musculoskeletal Diseases In Adulthood Priority Setting Partnership

The aim of the Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership (PSP) was to identify the unanswered questions relating to the treatment and long-term management of rare musculoskeletal diseases in adulthood from patient and clinical perspectives and then prioritise those that patients and clinicians agree are the most important.

This PSP decided that treatment and long-term management should include psychosocial management, as well as diagnosis. It was agreed to include diagnosis with the understanding that this can be challenging and the PSP has limited resources, and the steering group would therefore make the decision about how to take such questions forward depending on the responses received.

The PSP steering group agreed to focus on 3 ultra-rare conditions in this area:

  • X-Linked hypophosphatemia (XLH)
  • Osteogenesis Imperfecta (OI)
  • Fibrous Dysplasia (FD)

Read the full report

NHS Inform Musculoskeletal Helpline

The Musculoskeletal (MSK) Helpline is a phone service for people experiencing symptoms of MSK disorders - such as back pain or sports injuries.

NIHR Centre for Engagement and Dissemination

Building on the work of the NIHR Dissemination Centre and NIHR INVOLVE, the new Centre will lead NIHR’s work to make health and care research representative, relevant and ready for use.

The NIHR Centre for Engagement and Dissemination will further enhance the strong collaborative culture already established in engaging with patients, service users, carers and the public across the NIHR, providing coordination and thought leadership across the health and care system.

Read more

NIHR Involve

INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government-funded programmes of its kind in the world.

However  Since INVOLVE no longer exists and has been taken over by the NIHR Centre for Engagement and Dissemination:

https://www.nihr.ac.uk/news/nihr-launches-new-centre-for-engagement-and-dissemination/24576

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