A List of Engagement Resources

I have been collecting community engagement in health and well-being resources which are accessible online for a number of different purposes over the last few months and thought rather than keeping a static list to myself I would share the list which I will update I and hope others could fill in the probably large gap, so in no particular order…..

Please note that by community engagement in HW resources resources I mean publications, articles, resources, tools produced to help improve how patients, carers and citizens are engaged and involved in health and well-being.

NESTA co-production catalogue http://bit.ly/12h80NN

NESTA the business case for people power health http://bit.ly/15ON0CA

SCIE Co-production and participation:older people with high support needs http://bit.ly/13FFsOw

Cormac Russell Asset Based Community Development in a Health Context http://t.co/rTr9fKfd

Edgar Cahn No More Throw Away People http: nomorethrowawaypeople.org.uk

NHS III Putting Patients First: what do we really mean http://bit.ly/1471lpr

DH Better Health, Better Experience, Better Engagement http://bit.ly/11nvCDX

HELP Empowering Communities for Health http://bit.ly/11nvVhY
HELP literature review http://bit.ly/1a2qzH6

International Journal for Quality in Healthcare: Impact of patient and public involvement on UK NHS health care: A systematic review http://bit.ly/119FkIw

DH Smart Guides for engagment http://bit.ly/15t6AEN

NICE Public Health Guidance: Community Engagement Note 9 http://bit.ly/12cqTFw

Tricia Nicoll Consulting Co-Production – how are you doing http://bit.ly/10l9Ysl

Wansworth CCG Toolkit http://bit.ly/12jrxvU

NHS Lambeth Audit tool for engagement http://bit.ly/10ukRt3

NHS Lambeth Health and Well-being Board Charter http://bit.ly/13kmq0N

SCIE Towards co-production: taking participation to the next level http://bit.ly/11VV91Y

CAF Lessons Learnt Coproduction http://bit.ly/ZKVcvY

The impact of patient and public involvement http://bit.ly/13GDQ7h

Bring it on http://bit.ly/ZSdVJK

Kings Fund Leadership for Patient Engagement http://bit.ly/ZKVcvY

Fling open your doors http://bit.ly/18wXuFA

Altogether Better http://bit.ly/1473TnD

LMU Developing an assessment tool for evaluating community involvement http://1.usa.gov/13koC8E

LMU People in Public Health http://bit.ly/12hcSCB

Embedding patient and public engagement in local commissioning http://bit.ly/130NAGx

Macmillan Cancer Support Making user involvement effective http://bit.ly/1477bXS

BMJ Dr Jonathon Tomlinson We must join forces with our patients http://bit.ly/16kdZ8Q

AJPA Co-production and Health System Report – From Re-imaging to Re-making http://bit.ly/1478FS6

Pathways through participation: what creates and sustains active citizenship? http://bit.ly/YIgcZd

Shared decision making http://bit.ly/10J11ZM

HSJ Different strokes for different folks http://bit.ly/175qghr

PC3 Becoming a person centred commissioning organisation http://bit.ly/10dUgn5

High Impact Changes for CCGs http://bit.ly/YIhPWT

Kings Fund The Patient-Centred Care Project http://bit.ly/ZL3PXr

NIHR Exploring the relationship between patients experiences of care and the influence of staff motivation and well-being http://bit.ly/10wdwxJ

How to reconcile participation and representation http://bit.ly/10dVfn6

Health Foundation What is Coproduction? http://bit.ly/17OSZVQ

Picker Institute http://bit.ly/ZL8oRz

NEF In this together http://bit.ly/11nMvy8

Co-production A manifesto for growing the core economy http://bit.ly/12hjdOs

The New Zealand Medical Journal Improving Healthcare through the use of co-design http://bit.ly/15tkmaq

Health Affairs: Patient Engagement http://bit.ly/17OU93z

Scottish Council Participation Toolkit http://bit.ly/13kybEp

Ten Attributes of Health Literate Health Care Organisations http://bit.ly/1311Lv5

Decision aids for people facing health treatment or screening decisions http://1.usa.gov/194pqyc

Responsible Recovery http://bit.ly/ZL6Bw1

From Fairytale to reality http://bit.ly/10dXsiB

Making Shared Decision Making a Reality http://bit.ly/15tmqiy

The Magic Programme http://bit.ly/13kvJhh

VAW Involving people: a practical guide
http://bit.ly/13IpmDO

InHealthAssoc Engagement Cycle http://engagementcycle.org/

Why active citizenship should be at the heart of the NHS http://bit.ly/13876Up

Coproduction of Care Young Foundation http://bit.ly/19jUjmg

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#EMpowering Information in Health

Have just arrived home after three days of very different events in very different contexts but all with the same big message!

The first day, I was at the #developingNHSCBcitizenvoice event held by the NHSCommissioning Board for around 200 third sector organisations with an interest in citizen/patient/public voice. We heard an inspirational vision of an NHS that is led by principles of transparency, participation and collaboration from Tim Kelsey @tkelsey1 and Ciaran Devan (Nat Director and Non Exec Director/Macmillan on the NHSCB). Not to forget some excellent challenges and debate from Paul Farmer (MIND) and many more.

The second day, I was working with a small group of great people linked to South West Yorkshire Partnership Foundation Trust http://www.southwestyorkshire.nhs.uk/ on the co-production of an innovative approach to working with citizens to help patients navigate the health system linked to telehealth and other technologies.

And on the third day…. I was with 1000,s of ‘Executives’ mainly in and around the NHS at #confed2012

At all three events, voiced by many, were the following key messages:

  • The NHS is running out of time, we have one last chance to preserve what we all find precious about it, i.e. that it is relatively high quality, full of innovations, has a strong ethic behind it and is free at the point of contact. We have to face up to the pressures of growing demand, a different not patient, competent consumer and a very challenging financial and global climate. Paul Hodgkin http://www.patientopinion.org.uk/ talked of the immient Eurozone crisis and how this could hit our healthsystem, citizens and society hard compounding the difficult decisions and conflicts which already exist. Mike Farrar @farrarmike of the NHSConfed spoke of the NHS being a supertanker heading for an iceberg.
  • Citizens are part of the solution not simply passive consumers of health. The settlement between citizens and the health system, competent consumers and health professionals needs to change and become fit for the 21st century. Sophia Christie has written an excellent publication with the NHS Confederation which articulates why there needs to be a new relationshiphttp://www.nhsconfed.org/Publications/Documents/Personal_experiences_280212.pdf. Altogether Better www.altogetherbetter.org.uk have also written a joint publication with the NHS Confederation which shows just how that has been done at a community level through the Community Health Champions Model. http://bit.ly/NBPBXL

Bringing all three of these messages together Information and technology is a huge gift to the NHS that we need to embrace, not as the end output, but as the rich tool for achieving great things within health. However, there is one huge caveat, citizens must be mobilised and engaged in the developments or it will, at least, be a missed opportunity and, at worst, be a failure and waste of resource.

The best case scenario from my perspective would be that we brought active citizenship as an equal partner into information and technology developments. This could mean:

  • people to be involved in co-producing new assisted technology
  • volunteers in community be involved in marketing and supporting members of their community to use telehealth/care services
  • the conditions be created for new social networking opportunities which connects citizens with each other and the health system
  • that collaborative clinical technologies involved the patients they are being developed to help support
  • and most importantly to me that health’ communities are supported to build social capital, relationships with each other to ensure that technology does not exacerbate inequalities and increase isolation and the well known health challenges that these outcomes would bring.

All in all, an inspiring few days, although I really, really hope that this time next year all three of these gatherings have created the conditions where active citizens in health are able to join the discussions and tell their own stories.

On that note Lisa, an amazing Community Health Champion did go along to the first event (although was one of few and has actually recently got a job supporting new Champs- congratulations Lisa). I know Lisa so had already heard her story up to the point where she became a volunteer CHC after her GP connected her a the local community organisation. Three years ago she used to self harm regularly (see http://understandingdifference.blogspot.co.uk/2011/05/altogether-better.html for that part of the story) but what she told me this week was that she has a job, her self help group have been commissioned to replicate 8 times, actually the ‘systems’ counselling service (she was refered to and never received) now refers people to her group and she is supporting people who self harm through a social networking group reaching as far away as Singapore, oh and she worked out that she has saved the NHS £200,000!

Think that says it all! It gives me inspiration to do what I can to help create the conditions for people to have more power and control of their own health and the health system through information and technology.

Co-production in health: A new settlement between citizens and the health system

Last night I re-read three inspiring articles about co-production.

They stopped me in my tracks as I realised, that with the enourmous financial and societal challenges and the fundamental shake up of the health system we are experiencing at the moment, comes a unique window of co-producing a brand new settlement between health systems and citizens which could mean a genuine and deep-rooted transformational change in our whole approach to health and beyond….

First developed by Elinor Ostrom in the 1970s and taken further through the timebanking movement, co-production is emerging from the ether across the country, particularly though not exclusively (e.g. see Cornwall County Council), in health.

From a health perspective the potential that co-production offers if taken up at scale is incredible. Co-production really is the ’emerging paradigm’, as the quote from Bovaird says in Dunston, R., et al (2009) ‘Co-production and Health System Reform- From Re-Imaging To Re-Making’.

To move from a traditional paternalistic approach where patients have ‘choice’ and  ‘voice’ to one where the conditions are created where citizens and consumers, services delivers and other stakeholders share equal and reciprocal rights and responsibilities in the design, delivery, commissioning and management of public services could be transformational both in processes and outcomes for the health system.

Key to the approach is the focus on relationships, dialogue and a shared understanding and ownership of the guiding principles, creating the right conditions for the right conversation.

NESTA articulate the cost benefit outcomes of potential really well in their publication Boyle, D. and Harris, M. (2009) The Challenge of Co-Production, NESTA:

•Delivering better outcomes:
•Preventing problems
•Bringing in more human resources
•Encouraging self-help and behaviour change
•Supporting better use of scarce resources:
•Growing social networks to support resilience
•Improving well-being

At Altogether Better (www.altogetherbetter.org.uk) we have experienced the potential of co-production through the (20,000 strong) community health champion model where individuals, communities, groups and local health systems have begun to achieve incredible transformational change in health outcomes and productivity within the system with evidence of all of the NESTA outcomes.

The Health Foundations’s publication, Realpe, A. and Wallace, L., (2010) What is Co-production?, Health Foundation, is an interesting exploration of the potential for co-production through consultations for people with long term conditions where good self-management is a key contributor for living well. It makes interesting reading for me  as a type 1 diabetic. I have personally experienced a move in the direction of co-production through the ‘DAFNE’ approach to diabetes (www.dafne.uk.com), the connection with co-production is that it creates the conditions for the patient to gain control and power over the management of their condition through building confidence, The outcomes for me were: much better HBA1C (blood sugar level control – which evidence shows reduces risks of complications and huge costs to the system), two healthy babies and generally a very healthy and happy lifestyle and it spurred me on to become a volunteer governor at the Foundation Trust who provided the training and support.

Another fabulous example of co-production happening right now is the Leeds Hubs (administered by CIHM)  where citizens, patients, services, academics and others have come up with a set of simple guiding principles:

•Start with listening
•Treat all people as assets
•Find out what we are ambitious for together
•Invest in the development of communities so they can be partners
•Value and make the most of expertise gained through experiences
•Do with not too – challenge them and us
•Professionals – ask how you can help people to help themselves
•Take time to get to know each other – build social networks

So if we understand that our health system cannot continue to operate as it stands and we cannot afford to deliver expectations and meet the demands of an ageing population with complex needs and competent consumers and we have a transformational solution which unlocks a (low cost) a previously untapped resource (citizens/consumers) and shares the rights and responsibilities as well as the power and control across many rather than few, surely it is time to scale up and systematise that solution?

Imagine the possibilities if this approach became integral to all planning, commissioning, delivery and management of health services from national to local. Surely, co-production in health really is a no brainer, isn’t it?

Four really useful articles for gaining a broad understanding of co-production in health

aupa_608_HR_co_productionAJPA_March1

Co-production-report

Nesta Catalogue

What is co-production

Why should we release the potential of women leaders in the public sector?

The public sector is currently undergoing some of its most complex and difficult changes to date, in particular relating to the £95bn cuts over 5 years being made by Central Government. To illustrate what this means in a local context, for the Sheffield Teaching Hospital Foundation Trust this has translated to approximately £90m efficiency savings over three years and for Sheffield City Council this means £80m of saving in 2011/12 alone. At the same time new policy agendas are requiring a transformational change of culture, e.g. localism and big society, which both require public agencies to work in a very different way with local communities and the private sector. All of these changes are going to require public sector leaders to be more innovative, resourceful, engaging, skilful and efficient than ever with challenges ranging from large-scale workforce redundancies to building new partnerships with communities and the private sector. Phrases such as ‘more for less’ and ‘double spending’ are all emerging public sector language which reflects a new tough era of leadership. However, from adversity can also come creativity. In these times new leaders and new ideas can rise to the surface. In my experience there are signs that this complex environment could potentially lead to some really excellent outcomes, e.g. where the drive for efficiency is also forcing the public sector to engage more effectively with communities and to really unlock the assets which may have previously been ignored resulting in not only proven cost benefits but also better quality of life and services outcomes. To ensure that the public sector cuts do not simply result in an unsustainable, postcode lottery mix of low quality services run by whichever private sector company comes in at the cheapest price, public sector leaders across the board from the Civil Service to Local Government will need to be as skilled, multi-dimensional, entrepreneurial and innovative as some of the private sector’s greatest leaders. Linked to the need within the public sector around the development of more efficient well-rounded leadership is the current low proportionate levels of women rising to the leadership level in every aspect of the public sector, e.g. in Yorkshire and Humber there is only 1 woman out of 6 (17%) Chief Executives of the PCT Clusters and only 3 (14%) female Local Government Leaders out of 22. Nationally, in the 2010 UK general election, only 143 (22%) female MPs were elected out of 650. In the current cabinet only four of the 23 (17%) positions are held by women and only 22% of Local Authority Chief Executives are women. Women in business do not fare any better with only 14.6% of Board members in FTSE 100 companies’ boards being women. The 30% Club was set up in November 2010 to bring a better balance to boards and partnerships with the view that this will enable businesses to remain competitive in the future. A report by Société Générale suggests that 30% is the ‘magic number’ when the performance of a company increases due to a critical mass of women at a board level. So if the private sector is recognising the value of women in leadership, should the public sector be taking note? There are proven differences in terms of male and female constructs showing with an emphasis of the latter being around an ‘engaging’ style of leadership,(1) e.g. ‘concerned to take people with them’ . It is this engaging leadership style which predicts productivity, and morale, and wellbeing (2). The attributes of this style will become ever more important within a public sector which is set in an increasingly complex partnership environment managing public expectations, decreasing resources and wider societal issues such as the ageing population. There is both an ethical and efficiency argument for skilling up and supporting women to rise to the top. There is a need to offer women the chance to build up a toolkit of skills and knowledge and enable women to become stronger competitors with an increased credibility and confidence. This could potentially path the way for new approaches, innovations and partnerships across organisations and sectors! In conclusion there is clearly currently a lack of women in leadership positions within the public sector and a demonstrable need to redress that balance at this challenging time of change and within a context of needing a new leadership culture of engagement across the public sector and in building partnerships with communities and the private sector. Development opportunities for women need to be made more accessible to enable them to build the full set of skills and knowledge required to be strong competitors in the leadership market and this, combined with increased credibility, confidence and networks, will empower women to not only take up leadership positions but to change the culture and open up the system for women more widely and create a sustainable public sector which truly unlocks the full range of assets and resources within its workforce, partners and communities. Perhaps one day soon a 30% public sector club might emerge from the ether!

[1] Alimo-Metcalfe, B. (1995) An investigation of female and make constructs of leadership and empowerment. Women in Management Review, 10, 2, 3-8

[2] Alimo-Metcalfe, B. & Alban-Metcalfe, J. (2008). ‘Engaging leadership: Creating organisations that maximise the potential of their people’. London: CIPD.

My thoughts and memories on homelessness and health…

Mark Gamsu’s article on inclusion in health is thought provoking indeed.

It reminded me of a time circa 1997 when I was volunteering for Shelter in Bristol. At this time a fantastic man called Tony Harvey was working with people sleeping rough. An unsung hero, much of his work ended up in national rough sleepers policy. There was also a wonderful woman called Maya Bimson, both of whom have remained an inspiration for me.

My experience of volunteering in the housing advice centre, in cold weather night shelters and in the middle of the night counting people sleeping rough in derelict buildings still stay with me and drive me now.

I got far more than I gave in those days, insights and an experience which made me really understand the need to never judge people or to create blanket policies – someone said to me today ‘one size fits no-one’ and that sums up perfectly what I learnt from listening to some of the people seeking housing advice and sleeping rough in Bristol. A man who stands out for me was a older rough sleeper who wore lots of layers of clothing, a beard and a wise look on his face. I remember him sitting down in the cold weather night shelter telling me a life story of travelling the world, it never felt right or appropriate to ask him how he ended up with no roof over his head. This was sharp contrast to the young girl I met in the same place who I am sure was younger than the minimum age limit of 16. She was a really bright girl who I can remember saying ‘I’m going to the loo to powder my nose’. Tony was a great support, advocate and champion for all of these people, I wonder what he is doing now.

Around this time, many might also remember the phenomenon of ‘Sadly Broke’, the Bradley Stoke estate on the outskirts of Bristol near to where I ran a Deposit Bond Scheme for a while (my first proper paid job). This estate epitomised the negative equity mortgage crisis. We provided a place where people who weren’t officially ‘homeless’ despite living in cars/friends sofas etc and who couldn’t afford a deposit could get some help to get a roof over their head. We worked with empty properties schemes to find landlords who might be persuaded to take a risk with the people we were working with and offer them the chance for a roof and a new start. I can remember a very sad situation of a man who had split up from his wife and could not have his children to stay unless he had a home. He found a caravan in a field and managed to get the owner to rent it to him (with a deposit bond). He had nothing and we managed to get him cutlery, crockery etc. from the various fantastic voluntary sector agencies across Bristol. This man was so grateful and so happy, I really hope things worked out for him.

What is really disappointing is that we all felt so hopeful in those days that we could positively help to reduce the numbers of people without homes, without that basic human need. All the ideas and challenges, zillions spent on pilots and strategies, all that experience and knowledge, the learning about root causes of homelessness, where has it got us?

I returned to Shelter via its website this time to find out the latest. It says on the front page

‘Every two minutes someone faces losing their home’.

In the last 24 hours that’s 720 people who could have become homeless. It’s shocking and totally unacceptable, in a country where the top 1,000 richest people in the country have more than £400bn between them (BBC/The Sunday Times).

And coming back to the link to health, people who are homeless are amongst the most vulnerable groups in our society with the highest health risks and often complex health problems. Marks example of ‘Jim and the London Homeless Pathway’ does indeed give us great insight into the complexity of health and homelessness and the reasons why we in the health world should be playing our role in tackling these challenges.

Read Marks blog here

Northern Lights list reveals 50 ‘ones to watch’ in the North of England

In the run up to awards season, ippr north reveals 50 of the brightest and most talented people in the North of England from the worlds of business, academia, public service, politics, culture, the arts and social and community action.

Winner Roz Davies for the Altogether Better Health Champion campaign.  Committed to activating the full potential of community and workplace health champions across the country.  Expect to see Roz making sure national and local policymakers realise community health champions’ offer to the health system (and beyond) is one that just cannot be refused.

Read the IPPR press release here

Altogether Better Programme Wins Prime Minister’s Big Society Award

Altogether Better – a Yorkshire & the Humber programme involving volunteer Community Health Champions engaging with communities to help them lead healthier lifestyles – is the latest winner of the Prime Minister’s Big Society Awards.

The Prime Minister said, “Congratulations to the Altogether Better programme and their fantastic team of Community Health Champions. This innovative scheme shows the public sector empowering local champions so that they can in turn inspire and support others within their communities to lead healthier lives.  It is an excellent example of a project encouraging social action and opening up our public services. That’s exactly what the Big Society is about – and that’s why I wish them every success for the future.”

Read the full press release from No.10 here