Our UK patient access to records pioneers would agree with you that "Making research recommendations actionable often requires reflecting and enriching them with... direct interaction with policy-makers, implementers, and people with lived experience. In my view, this is the core supporting function of knowledge translation." [Sam Sieber, Switzerland: https://www.hifa.org/dgroups-rss/communicating-health-research-60-q1-wha... ]
In 2007, once pioneers of patient access to records had gained the attention of the press, government, patients, the public, regulatory body, professional organizations, IT companies and medical indemnity organizations, the pioneers set up a Record Access Collaborative (RAC) and advised the very helpful and supportive medical profession's regulatory body - the General Medical Council (GMC) to undertake wide consultations with many bodies throughout the UK (Organizations who replied are shown below to show the breadth of the survey and engagement,). This consultation was fortunately supported by a strong secretariat and GMC President.
If it is any help as an example here is the list of organizations that actually gave evidence in response to requests from the GMC secretariat: The number of replies suggests considerable buy-in from civic/patient and professional bodies. The survey also acted as a communication of intent which in itself achieved one of the objectives of communication of the results of research and of the eventual functionality of the guidance.
CIVIC/PATIENT ORGANIZATIONS: Action for Blind People, Addison's self help group, Arrhythmia Alliance, Atrial Fibrillation Association, Behcet's syndrome Society, Diabetes UK, Gorlin Syndrome Group, Herpes Virus Association, HPTH (hypoparathyroidism) UK, Insulin Dependent diabetes Trust, Migraine Action, Mind, Pelvic Pain Support Network, Rotherham General Hospital Foundation Trust Patient panel, Royal National Institute of Blind People, Skin Care Campaign, Syncope Trust and Reflex Anoxic Seizures, Terrence Higgins Trust, Torbay Inflammatory Bowel Disease Panel, Tuberous Sclerosis Association, Which? magazine.
PROFESSIONAL: Allied Health Professionals Federation, Breast Cancer Care, British Dietetic Association, British Medical Association, Cancer Research
UK, Clinical Leads, Community Practitioners' and Health Visitors' Association/Unite, Department of Health, Faculty of Dental Surgery, Royal College of Surgeons of England, General Medical Council, Joint GP IT Committee, Medical Defence Union, Medical Protection Society, National Clinical Reference Panel, National Information Governance Board, Nursing and Midwifery Council, Information Commissioner's Office, Public Health Nurse, Royal College of General Practitioners, Royal College of Nursing, Royal College of Obstetrics and Gynaecology, Royal College of Paediatrics and Child Health, Royal College of Physicians, Royal Pharmaceutical Society of Great Britain, The British Society forRheumatology,
Richard
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data. Email address: richardpeterfitton7 AT gmail.com
