I am often asked whether it is difficult - if not impossible - to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public. My answer is that it might be difficult but it can be done. And the benefits can be significant. The real challenges … Continue reading A lab-based environment should be no barrier to public involvement in research #userinvolvment
In my opinion there are 'happy clappy apps,' 'crappy apps' and then there are the 'apps' that work. Late last year PatientView - the font of all knowledge on what makes a good app from a patient perspective - published a survey showing 9 out of 10 app users found most health apps to be … Continue reading Some gr8 new health research apps involving citizens are coming online in 2016. Here’s a quick peak.
I didn't think so. Do you get those nagging calls about PPI? It's usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI - yes, Payment Protection … Continue reading Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve
Why shouldn't you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment? Why shouldn't we be able to expect to have that discussion with our doctor as part of our diagnosis and care? Why shouldn't we be able to access research evidence so we … Continue reading NIHR looks to go PROACTIVE with plan for research participation and engagement
Parkinson's UK is an excellent organisation. It is arguably an exemplar for other charities looking to involve patients and the public in medical research. This week, together with the indefatigable James Lind Alliance, it set about the task of asking people affected by Parkinson's - those with the disease, carers, family members, health and social care professionals etc., - … Continue reading Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions
The Neurological Alliance which represents over 70 charities in the field has wheeled out its big guns today to highlight the lack of preparedness across the NHS to meet the needs of increasing numbers of people with neurological conditions. It really is wheeling out its big guns such as Steve Ford at Parkinson's UK and … Continue reading Neurological Alliance issues wake-up call to Government and NHS over neurology services
This piece from Forbes Magazine is worth reading as a critique of the Obama Presidential Advisory Group draft framework on Alzheimer's published this week. The Group have set a goal of effectively treating and preventing Alzheimer's by 2025. Obama and Nixon would make strange bedfellows. But the last paragraph of the article is perhaps the most salient in pointing … Continue reading Obama echoes Nixon’s ‘war on cancer’ with pledge to Alzheimer’s families