public health

A curious story caught my eye in the Sunday Telegraph.

It told how High Street retailers are sending adverts and money-off coupons to the mobile phones of passers-by.  Soon, they hope to be able to track people through their shops; when they pass the sock counter or the delicatessen they’ll get more messages about the unbelievable in-store offers.  Or order coffee without spending time in the queue.

A representative of the mobile phone company, Samsung, is quoted as saying: ‘This is about using smart technology to make life more efficient and productive.’ Spoken like a true salesman.  Consumers want the best possible deal. Shops are good at delivering. All with their consent, naturally. Over and out.

It’s all too easy to condemn our High Street colleagues for what some might call ‘predatory marketing’  But the fact is that they are simply jumping where others – Government public sector organisations, charities etc – would dearly love to go in the name of better health care and patient benefit.  And who can blame them? Or should I say, us?

Yes, to be honest, if I could have wired everyone’s phone on International Clinical Trials Day (ICTD) on 20 May so that NIHR”s ‘OK to ask’ campaign appeared on screen as they walked by their local hospital or GP surgery I would have done it.  Sorry.  But the message just seems too important to leave to chance. (I do, as it happens,  get lots of recorded voicemail messages about PPI, it’s just the wrong sort!).

As a reviewer I am seeing more proposals than ever before for using mobile technology or social media to nudge the behaviour of fellow citizens this way or that.  But they all seem to be a bit, er, basic compared to the sophistication of what’s happening in the private sector.  Nor can I get rid of a nagging feeling that companies know their consumers better than we know our patients.  We could learn something from them I am sure.

In Saturday’s Daily Telegraph (where a shorter version of the mobile phone story also appeared) there was another article about M&S becoming the first retailer to add Vitamin D to bread.  This in response to the well-document explosion in the number of cases of Rickets among children, a disease thought as good as eradicated in these shores just a short time ago.

(As an aside, you could argue that there’s not a great deal of difference between unprompted messages on our mobile phones and  putting more vitamins in our food. Both are intended to be for our benefit.  Both are covered by the small print which many of us will never read.  In each case the provider can argue that the choice is ours.)

Nonetheless I tend to agree with the quoted hospital consultant – Chris Coulton – who queried the impact of the retailer’s move and said he’d rather see more attention paid to public awareness and education.

Or we could combine both, of course. In fact whose to say that one day we shouldn’t be able to open that loaf of bread from the supermarket, scan the bar code and get all the information about Vitamin D that we want, how it’s important, alternative sources and then allow us to monitor our intake with the inevitable downloadable app.

Nanny state? Perhaps.  But it’s got to be better than the sliced bread currently on offer, hasn’t it?

Community-based Participatory Research: Unlocking the potential – 25th September in Bristol, 14.30-16.00.

Dr Ann-Gel Palermo is an experienced community activist researcher, involved with numerous organisations, local and federal committees in the USA concerned with public health and health disparities. She is chair of the Harlem Community & Academic Partnership (HCAP) which is a New York based partnership of community residents and representatives from community based, public health and academic organisations, with a community-driven and action-oriented approach to health research and health policy based on the social determinants of health. A seasoned community partner, Ann-Gel believes that community partners are uniquely positioned to enhance research work and to do it well.

Expect to hear about Ann-Gel’s work, engage in a discussion about CBPR and share ideas, questions and experiences of CBPR in the context of community-academic partnerships.

The free workshop is open to all, and is particularly relevant to health professionals, academics, community based organisations, students and volunteers who are interested in the role of CBPR, and how it can be effective in addressing social issues.

Details of Dr Ann-Gel Palermo’s event and the booking form are here

The European Medicines Agency (EMA) has published the note of the conference held in London a few weeks ago, about its plans for proactive publication of clinical trial data.

It is now setting up five advisory groups and inviting self-nominations from people to join these.  You will find the following listing of the advisory groups, plus a form to fill out if you wish to put yourself forward, by going to this link.  But I thought it would be helpful to cut-and-paste the descriptions of the groups as on the website.

Advisory group Topics
Protecting patient confidentiality How can the Agency ensure through its policy that patient and other personal information will be adequately protected, i.e. that patients cannot be retroactively identified when clinical-trial data are released, and that applicable legislation, standards, and rules regarding personal data protection will be respected?
Clinical-trial-data formats How can the Agency ensure through its policy that clinical-trial data can be shared, in the interests of public health, in a clear and understandable format that enables appropriate analyses and a swift implementation without undue burden to stakeholders?
Rules of engagement Are there rules or conditions that should be in place before an external stakeholder can download clinical-trial data (e.g. formal acceptance of the need to respect personal data rules, uploading of analysis plans etc.)?
Good analysis practice Are there good-analysis-practice guidelines that the Agency could ask external requestors of data to consider or be aware of, and that the Agency can apply when confronted with additional analyses from external parties?
Legal aspects Are there any legal aspects other than personal data protection that need to be addressed when drafting the Agency’s policy? Are there exceptional circumstances under which data can be claimed to be commercially confidential?

In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question:  ‘Who is fighting the patient’s corner?’

He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients.  A thick, muddy, layer of ineffectiveness which will be, at best, no worse than the previous one.  Funny how, in the face of it, we have become all dewy-eyed at the distant memory of the much-maligned Community Health Councils (CHCs).

Anyway, it sounds like one of those conferences I was pleased I missed in the end even though I was booked to attend.  Not least because I didn’t then have to listen to Stephen Bubb’s new-found ‘expertise,’ as reported by Dick Vinegar, on who funds the most medical research in the UK.  Quite alarming.

Watching the daily traffic on twitter from this conference or that conference, much of it laden in the latest buzzwords, I sometimes wonder whether we are indeed living in a parallel universe to the public.  In fact I suspect Dick speaks for most of the nation when, with refreshing honesty, he admits his lack of knowledge about some of the ancestors of Healthwatch.  I guess that even those that can, would then have difficulty describing what they do or what they have done.  The portents are not good for the latest round either.

On the other hand it is easy to overlook the impact that patient advocacy has had in recent decades and rather opportunely I noticed that PatientView have brought out an interesting report looking at the influence of patient groups in the UK and around the world.  Discuss!

But I do fear that we are at times in danger of creating an industry that reflects the interests of its managers and owners, rather than the social movement – a group of people with a common ideology who try together to achieve certain general goals – that I hear many people aspire too.  Form and function have taken precedence over aim and purpose.  What is missing it seems to me is a complete lack of thought about how, looking beyond the new structures, we ‘get out there’ and mobilise public interest and participation.  Hence many good colleagues will find their way to the table to find that their feelings of isolation are not much different to the ones they had in the old world. They will plough a lonely furrow and the yields will be poorer for it.

Last week I had the good fortune to share some time with two colleagues who have both been around a bit and know their stuff on public involvement.  I was expressing my worries about how obsessed people are currently about structures, definitions and processes.  We work long and hard to create these things and then wonder why the public pass it by.  I asked whether this had always been the case – particularly with regard to public involvement in research – and whether people had been paralysed with an overriding need to cross all the t’s and dot all the i’s .  The answer was refeshing:  ‘No, we just got in there.’  Anywhere, in fact.  The philosophy being to seize on any opportunity that could help make change happen.  And it did.

‘Get out there, get in there’ sounds like a perfectly reasonable call to action to me.

 

 

The Shard went up (officially).  And the NHS Commissioning Board Draft Mandate came down from on high.  All on the same day.  Add the odd torrential downpour with its associated misery and these could be Biblical times.

I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent phone signal when such momentous events occur.  On this occasion I was taking part in the Third NIHR Experimental Medicine Research Training Camp; a three-day residential meeting where over 60 NIHR doctoral students were learning the art of science communication.  By their own confession they were taken out of their comfort zone.  No more so than when they had to test their ideas in front of our excellent lay advisory panel.  It forced them to think differently, to re-interpret their knowledge and expertise from a public and patient viewpoint.  But the outcome in terms of their plans and ideas was superlative.

So what about the NHS Commissioning Board Draft Mandate from the point of view of public and patient involvement in research?

Unsurprisingly most attention has been drawn to page 26 of the Mandate headed’Promoting growth, research and innovation’ which looks at the role of the Board in promoting research by:

  • Working with research funders
  • Improving adoption and spread of new technologies
  • supporting patient participation in research

Objective 17 and associated Annex B set out more precisely how this will be achieved and measured.  The commitment to measure increasing patient recruitment is important.  It is my view that this data should not only be about participation rates (already available through the clinical research networks), but also the extent to which patients are being offered the opportunity to take part in research  (a possible role for the Care Quality Commission (CQC) through its annual patient survey).  Together, these measures would tell us much about the extent to which the NHS is realising its duties in terms of research and patient choice.

For what it is worth, my own view is that the real game-changer in the Mandate when it comes to participation, falls within the ‘Choice Framework’ set out in Annex D.  For this begins to set – for the first time and in some detail – the expectation that patients should be offered the opportunity to take part in relelvant and appropriate research as part of their care and treatment.  It gives them and us license to challenge the system to make that choice a reality.  As will the reviewed and renewed NHS Constitution when it comes out in draft form this autumn.  Or I hope it will anyway!

The less satisfying aspect of the Mandate is the weakness of its statements on public involvement – as National Voices has already pointed out.    In fact, it is very poor indeed.  I already have a growing sense of unease over the new corporacy which may be creeping over some Clinical Commissioning Groups (CCGs) as they tackle the issue of public involvement.  A number of CCGs are clearly in the search for those with specialist expertise and skills, as opposed to finding those who can reflect and articulate the patient voice.  Others, on the other hand, are doing their best to get it right.  But it is difficult to get a cohesive picture of what is happening because the signals are intermittent and often broken-up.

So I would say this.  It is important that we respond to the consultation on the Mandate to support and strengthen its statements about patient choice and research.  But equally important is to hear people’s experiences about what is happening with public involvement locally, good and bad.  For we must make the case that, in order to meet its objectives, the NHS Commissioning Board has to ensure a better foundation for public involvement than it has thus far.

Only if we provide space for patients to challenge the system will we see improvements in the way that care and treatment is provided and people’s choices honoured.

‘Caldicott 2’ is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn.  The title of the review is ‘Information: to share or not to share?’

I passed by the official website today and noticed that it now has a huge amount of information on there about the review panel membership, process and forthcoming evidence sessions.

Of particular note is the fact that the panel is holding an evidence-gathering session on research on  10th July and have invited submissions on the theme.  The above link will take you to the specific page about the research theme including a comprehensive document outlining the questions on which they are seeking views. This includes a ‘section 6’ which focuses on Patients and the Public and I thought it might be helpful to cut-and-paste these particular questions below:

Patients and the Public

a. What information should patients and the public be given about how their information is used and to whom it may be disclosed? How can we ensure patients and the public are better informed about research and how their information may be used for research?

b. How can patients’ and the public’s views and wishes in relation to the use of personal and confidential data be accommodated? To what extent should patients be able to exercise control over anonymised and pseudonymised data?

c. To what extent should minority views be accommodated within systems?

d. What and how should consent and the withholding or withdrawal of consent be recorded?

e. How granular do you think the consent recording requirements need to be?

f. The UK Life Sciences Strategy has proposed that the NHS Constitution commitments are amended to reflect the presumption that:

  • data collected as part of NHS care can be used for approved research, with appropriate protection for patient confidentiality; and
  • that patients are content to be approached about research studies for which they may be eligible, to enable them to decide whether they want a discussion about consenting to be involved.

Patients will retain the right to opt out but it will remove the current requirement for consent for the disclosure of confidential patient information to researchers.

What are your views of these proposed changes to the NHS Constitution? Do you have suggestions for how this might be implemented? Do you have concerns about the ways it might be implemented?

However, I encourage you to look at the full range of questions because many of the others are of relevance.

Details of where to send evidence too can be found here.