Healthtalkonline new website
A newly redesigned Healthtalkonline.org has just launched. The website has amassed more than 5,000 pages and 20,000 videos of people sharing their real experiences of illness and health-related issues.
The MRC has published a series of educational videos documenting life-saving discoveries e.g. nutrition. Please see link below:
Great article about HIV activism http://www.theguardian.com/science/2013/dec/01/world-aids-day-how-aids-activists-changed-medical-research
Great film about cancer from Vivienne Parry http://www.vparry.co.uk
NIHR Annual Report published - http://viewer.zmags.com/publication/26f799ac
Bec Hanley and I have set up a new business called BecandDerek - More news to follow
And thanks to Tracey Johns and INVOLVEfor the following...
Dame Fiona Caldicott will now chair an independent panel to oversee and scrutinise implementation of the review’s recommendations and to provide advice on information governance issues.
The Information Governance Review report has now been published https://www.gov.uk/government/publications/the-information-governance-review
Further information and the background to the processes of the review is available here:
There is a review of the report by the Association of Medical Research Charities detailed on their blog : http://policyblog.amrc.org.uk/2013/04/26/the-calidicott-review-recommends-how-personal-data-should-be-used-for-research/
and the Health Secretary’s response to the report https://www.gov.uk/government/news/health-secretary-to-strengthen-patient-privacy-on-confidential-data-use
This is a new online map on the INVOLVE website. The map displays information on groups and organisations that support public involvement in NHS, public health and social care research. www.invo.org.uk/find-out-more/invodirect
Visit invoDIRECT to:
- add details of your group or organisation so others can find out more about how you are supporting public involvement in research
- search for local and national UK groups and organisations
- find out about international groups and organisations supporting public involvement in research
To find out about INVOLVE visit our website www.invo.org.uk
For information on what public involvement in research is http://www.invo.org.uk/find-out-more/invodirect/
News Desk - March (Thanks to Karen Inns)
Online records/interactive map health and care system from April 2013/NHS Commissioning Board appoints new Director of Patient Experience
Please note the following updates for your information:
1. Keeping your online health and social care records safe and secure
By 2015, everyone in England will have access to their GP medical records online. Many other health and social care organisations are providing access to records too, and some people are creating their own health records online. This guide was produced by BCS, the Chartered Institute for IT, and the Department of Health. It was developed and tested with the help of patients and interested organisations. For more information, visit www.nhs.uk/records .
2. The health and care system from April 2013
This interactive diagram gives an overview of the new health and care system from April 2013. It illustrates the statutory bodies that will make up the new system, oriented around people and communities and where they receive their local health and care services. Clicking on any of the organisations will provide you with more information about their specific role.
3. NHS Commissioning Board appoints new Director of Patient Experience
The NHS Commissioning Board has appointed Neil Churchill as the Director of Patient Experience (Domain 4). In this new role, Neil will ensure that improving patient experience is at the heart of the system, providing leadership for patient experience across the NHS and taking leadership responsibility for improvement of domain four of the NHS outcomes framework, patient experience. At present, Neil is the Chief Executive of Asthma UK and is a Non-Executive Director in NHS South of England. He has over 25 years’ experience of working in the voluntary sector at organisations like Barnardo’s, Age Concern and Crisis, and a member of the Richmond Group of major health charities.
Previous news from 2nd February 2013
The UK Clinical Trials Gateway - Survey Report is now published. Read Simon Denegri's outline here.
Launch of the Throat Cancer Foundation - a new charity supporting and campaigning for HPV vaccination for all.
Previous news from - 14th January - Some Consultations (Thanks to Karen Inns)
Previous update from 6th Nov 2012
Action on Access An excellent report on widening patient participation in clinical trials from the National Cancer Research Network
Impact Report Excellent report on patient an public involvement in cancer research
No More Throw Away People
If you have a couple of minutes then please watch this excellent little clip. It is essentially about co-production but says a great deal about involving the public. It is from a website called: - The Parable of the Blobs and the Squares
Building Research Partnerships This generic workshop bring together researchers and the public as an introduction to both research and public involvement. Find out more at the Macmillan Learnzone
Open-Source Research - An interesting perspective on the future of working together to improve cancer research
And sadly, some more unacceptable behaviour by Pharma.
Previous Update from - 24th Sept 2012Thanks to Paul Charlton and Simon Denegri
Social Care, Service Users and User Involvement - new collection of articles edited by Peter Beresford with an introduction by Simon Denegri
The Ageing Population - Interesting statistics from the UK Parliament site even though it is few years old.
End of Life Care Research - A new interest group for research in this area has now been established. This group has a broad membership and is being supported in its development by NCRI.
Patients Pay Costs of Spending Cuts - Blog reporting on effects of spending cuts in Greece on health.
Previous Update - 15th July 2012
Thanks to Bridget Wilkins, Roger Steel, Neil Formstone, Susan Hamer, Richard Stephens, Claudia Bell and The Herald newspaper
National Research Ethics - Advisors' Panel. Members wantedNote: The closing date for receipt of applications is 20 August 2012
Patients & Pharma - Working Together - Patient Groups & Industry. A great manual with sound advice
About SCIENCE and Things
Cafe Scientifique - Worth a look for those interested in having a dialogu
Let's Talk about Genes - Great rap from school in Wales via Tenovus
Academic Health Science Partnerships - DH invites expressions of interest
Academic Health Science Partnerships - DH invites expressions of interest
And from my Blog:
Thoughts on being a public/lay/patient board member in research: http://alturl.com/kbs7f
All I want about research: http://alturl.com/48v6r
Why can't the public have more of a say in research? http://goo.gl/NOk6l
PREVIOUS NEWS DESK ITEMS - Please scroll down to have a browse.
From 28th June
Thanks to Maggie Wilcox, Simon Denegri, Jack Nunn and Louise Woods
Impact of Ethical Aspects of Research
Strategies for Diversity and Inclusion in Public Involvement
Simon Denegri gave a talk about Public's Role in helping the Life Sciences
PatientsLikeMe on Open Access: interesting article
Other Information about Research
The latest IRAS documents can be found here
David Willets, MP gave a talk on the importance of life sciences to health and wealth
Some Information about Commissioning Arrangements and other bits
From Update - 13th June
Thanks to Dave Ardron, Carol Gibbons for some of these references...
From Update - 2nd June:
Thank you to Karen Inns, Diana Robinson, Simon Denegri for bringing these to my attention
Guardian Online live Q&A: Engaging public participation in clinical research
On Thursday 24 May the Guardian Online hosted a live Q&A session to help mark International Clinical Trials day. The topic was: Engaging public participation in clinical research. There were five pages of comments and posts and some really interesting information and resources that PPI people will find useful. The Guardian Online editorial team will produce a round up article sometime next week and post it on the Clinical Research Partner Zone
Shared Decision Making in Health You may like to read this report on shared decision-making in the NHS. There is also some comment on this report in the BMJ
Patients Preferences Another recent paper from The King's Fund may be of interest which addresses what patients would prefer.
NHS Smart Guides These are very helpful documents help explain the role of HealthWatch and the new commissioning arrangements
The James Lind Alliance are keen to invite people to become affiliates - click on word.
Community Participation - Interesting article on the Next Generation of Community Participation - Community Collaboratives: