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- 1. Dementias & Neurodegenerative Diseases Research Network “Is there a patient in the house? - public involvement in research” Simon Denegri NIHR National Director for Public Participation and Engagement in Research
- 2. Patient participation in NHS research Public appetite • 82 % of people believe it is important for the NHS to offer opportunities to take part in healthcare research. NIHR Clinical Research Networks Survey May 2012 • 81% are willing to get involved in dementia research • 76% of people believe experiences of patients and carers could be important for shaping research studies. YouGov for Alzheimer's Research UK 2013 Patient experience • 91% of Trusts do not provide information to support patient choice in research NIHR CRN CC Mystery Shopper 2013 • 34% of respondents did not know enough about what participating in research would involve - and this % is slightly higher amongst older age groups • Very few people appear to know someone who has taken part in research YouGov for Alzheimer's Research UK 2013
- 3. Dementias & Neurodegenerative Diseases Research Network Policy, legislative and organisational framework • Life Sciences Strategy • Health and Social Care Act 2012 • NHS Choice Framework • NHS Constitution; use of medical records in research • Organisations: CCGs, Healthwatch, DeNDRoN, Academic Health Science Networks (AHSNs) “Patient experience is the most important concern for the NHS Commissioning Board” Sir Malcolm Grant , Chair, NHSCB
- 4. Dementias & Neurodegenerative Diseases Research Network Reasoning for taking part – THE EVIDENCE • Can improve quality of life / treatment • Altruistic motives • Interaction between study coordinators and patient/carers
- 5. Dementias & Neurodegenerative Diseases Research Network How can you can get involved? • Taking part by participating in a clinical research study • Becoming a member of a patient research group to share your views on our research ideas.
- 6. Dementias & Neurodegenerative Diseases Research Network “We want more people into clinical trials; more people getting that chance to get the very latest drugs. Our ambition is this: at least 10 per cent of people with dementia should be able to take part in clinical trials – up around ten times from today” March 26 2012: Prime Minister’s Challenge on Dementia: Delivering major improvements in dementia care and research by 2015 “ “
- 7. 665,065 People estimated to be living with dementia in England 4% Of people with dementia were involved in a dementia-related study in 2012 The challenge
- 8. Dementias & Neurodegenerative Diseases Research Network Challenge areas • Increasing willingness • Enabling patient choice • Involving patients from the beginning • Seeing research as a key driver of quality • Putting a human face on data to inform choice and improve health
- 9. “Every patient who walks through our hospital doors is offered the chance to take part in a clinical trial” I was able to refer myself to a clinical trial unit They told myself and other patients what they found out in the trial before anyone else. It was easy for me to find out what’s going on locally I was able to discuss taking part in research with my doctor shortly after I was diagnosed I feel as though I was able to make a difference Patients can talk to other patients in our Trust to find out more about research My care and treatment was of a higher quality I joined the national register for research First I took part and now I help design trials. How good is that?
- 10. Dementias & Neurodegenerative Diseases Research Network Patient-driven access • Vision will be achieved by patients and the public: – Asking about research – Choosing to take part in research – Knowing their contribution has made a difference – Shaping the way in which research is designed and delivered – Leading change at local and national level to make research happen – Reporting on and sharing their experiences with commissioners and providers
- 11. Dementias & Neurodegenerative Diseases Research Network Campaigns helping us deliver the research agenda…
- 12. International Clinical Trials Day (ICTD): 20th May 2013
- 14. Dementias & Neurodegenerative Diseases Research Network Patients in Research infokit A platform to share stories, ideas, tips and tools to embed research across the NHS. www.patientsinresearch.org EXPLORE CREATE TELL US how others are integrating research into care your own strategy to embed research about your initiative no matter what your disease area
- 15. What can you do? Get research on the agenda 2 Support “It’s OK to ask” campaign 1 Sign up to DeNDRoN community 3
- 16. Dementias & Neurodegenerative Diseases Research Network Want to know more? Visit: www.dendron.nihr.ac.uk Email: info@dendron.org.uk Phone: 020 3206 4960
Editor's Notes
- Presentation will coverWhat is your right?What you can do as a patient to get involved in clinical research? How this will help shape the future of dementia?
- Improve quality of life / treat disease The most important reason given by carers was direct medical benefit to the patient, help the relative feel better and even to cure their ADIn one survey, several caregivers stated that a sense of desperation they felt about finding help for their relative motivated their enrolment, but this feeling of desperation was low on the list of reasons(Mastwyk, Ritchie et al. 2002; Mastwyk, Macfarlane et al. 2003) (Lynoe, Sandlund et al. 1991; Karlawish, Casarett et al. 2001)Altruistic motivesbelief that participation benefits others in future cited by one participant was that they cannot leave money to the university but can help by contributing to research (Lynoe, Sandlund et al. 1991; Morrow, Hickok et al. 1994; Connell, Shaw et al. 2001; Mastwyk, Ritchie et al. 2002; Mastwyk, Macfarlane et al. 2003)Interaction between study coordinators and patient/carersTrust in doctor and their medical knowledge is another common reason for one to participate in clinical studies in general (Geston and Mcvamara 1984)Some participants report that enrolling in a clinical study gets the patient more medical attention and that the medical system takes better care of you when you participate (Connell and Gallant 1996)Although there was no change physically or emotionally to the patient as a result of participating, majority of carers felt that participation was a positive experience
- Patients are at the centre of what we do. As a patient, carer or a member of the public you can help research.By being involved in a ‘research patient group’ your help will ensure we continue to deliver exceptional healthcare now and in the future.You don't need any research experience. People with personal experience of healthcare are best placed to comment on what research is needed and how research should be done.Members of the public can bring a different perspective that is not always the same as those of researchers. Your involvement helps to ensure that the process is focused on what is important to people making it more relevant and acceptable to people who need to use our services.For example……being part of a research patient panel you will be able to:Comment on researchers’ treatment ideasComment on how treatment will be carried outRead and give feedback on patient information sheets, letters to patients and questionnairesParticipate in Research Committees and Research Project Meetings
- 2 key pointsPM challenge – This is a Government priority10% ambitionPatient and public involvement throughout
- Currently only 4% of patients are involved in research, but we are aiming for 10%, so there is a lot more work yet that needs to be done….This is where you (audience) come in…… we need every trust to get research on the agenda, we every patient and carer asking their clinician or nurse, every health profession asking their patients, and signing up to research.
- Patient pull-through increasing willingness to take part in clinical researchEnabling patient choice in research as part of the care pathwayResponding to the patient challenge over how research is conducted and their part in itEncouraging NHS leadership and culture to see research as a key driver of qualityInformation-sharing, transparency and openness: putting a human face on data to inform choice and improve health
- Collaborative working to:Supporting patient choiceDefining and diffusing models of public involvement that drive participationImproving public awareness and understandingLearning from patient insight and experience Supporting patient and organisational leadership
- Key messagesWhat we want people to doHow they can help
- Initiatives like Patients in Research are trying to get research on the agenda of every organisation:Research should be a core part of any care pathway.The infokit is a platform to share ideas and practice: showcase work from across the NHS and research community to improve patient participation in research and recruitment to studies.All NHS organisations should be offering research. And there are many ways they can achieve this – some of the universal themes, irrespective of the field. changing culturepartnering with othersintegrating research into care pathwaysExplore the website and tell us how you are doing itAn example of a project to empower patients to askDescription: When it comes to recruiting people into clinical trials and studies, the onus is often placed squarely with the consultant to ask their patients about involvement in research. However, in an environment where the consultation period is short, research can often slip off the agenda. The Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) decided to look at this issue from another angle by asking whether the patient could easily be empowered to take the responsibility for asking their consultant about getting involved rather than the other way around. To do this, the network worked closely with a number of managers and service leads across their host Trust to investigate the possibility of placing a simple sentence about research involvement at the bottom of every outpatient appointment letter.Impact: The results, although impressive, were not due to patient empowerment as expected. But once again proved the importance of engaging patient facing NHS staff in research and the positive impact one small simple change can make to patient recruitment. Through altering the trust approval process and standard appointment letters, consultants were more aware of the research going on locally and referred more patients to research.
- A role and responsibility everyone to promote and integrate research. Talk about researchHave a conversation about research and whether they might be interested in being involved in future research.Use the UK Clinical Trials Gateway website to find out about research that might be relevant to your patients.2. Get research on the organisational agendaResearch needs to be embedded at all levels of the organisation – from the board to the ward. We need to make it a routine part of care.3. Get more involvedSign up to the Research Ready Care Home Network – see DeNDRoN websiteJoin the DeNDRoN community.Patients and carers – register your interest in being involved in research – on DeNDRoN website.