Are Health Charities becoming more Patient Centred? (A Trip to Parkinson’s UK)

Winds of Change

The winds of change seem to blowing through a number of health and other charities. This freshening breeze is moving them away from ‘doing things for and to’ people towards greater partnership ‘with’ patients, carers and the public. This creates a climate that is more centred on the lived experience and knowledge of people affected by a disease, condition or illness.

This approach is welcome news for many of us who want to have more of a say and see real change from the charities we support and the way we lead our lives.

A recent article in the Guardian by @bensummerskill highlighted a number of the reasons that may lie behind these changes but for some charities it is simply seen as the right direction of travel. Charities that have a strong partnership ethos should be commended as I noted in a previous blog about Diabetes UK.

A Working Visit

Bec and Derek (Bec Hanley and I) had the pleasure of working at Parkinson’s UK in London with their User Involvement team at the end of July this year. It was really interesting to meet the group, find out what they are doing and learn from their experiences which are innovative, inclusive and imaginative.

Parkinson’s UK published an edition of their research magazine in 2014 that was actually guest edited by the partner of a person with the condition.

The title PROGRESS even makes it sound interesting and something I want to read. Its content is as much about all the people who make research happen (from patients to researchers), donations (from fund raising to brains) and the research (from practical living to stem cells).

Likewise, their quarterly member magazine, The Parkinson, has an editorial board which includes people affected by the condition and they have also started guest editing, having a chosen user guest edit the Summer issue.

This is joined-up thinking as are all of their information resources, which are systematically tested by users before publication.

User Involvement Advisors 

The User Involvement Advisors we met, a small and well-formed team, are actively involved in a wide range of activities with volunteers, fundraisers, staff, patient groups and communities. (The list written up on a flip-chart appeared endless so it will be good to se it typed up and circulated.) They are well supported in their work by Luis Perpetuo, User Involvement Manager.

Three of the team of four User Involvement Advisors are affected by Parkinson’s themselves, and show a commitment and compassion that is almost beyond measure. It was good to see that people whose voices are seldom heard have a presence and are central to user involvement at the charity.  I was pleased to see too that handling compliments and complaints are part of the team’s remit.

This commitment and compassion is equally true of people with other conditions yet what struck me most was the strength of feeling about the genuine nature of the relationship between the team and the organisation. There was an authenticity in the discussion that made it evident that there was real impact.

The  User Involvement Advisors spread the word about Parkinson's, talking to local patient groups and to the charity's fundraisers. They promote involvement with the charity to their peers, which has a different impact compared to other members of staff doing the same.

You can shop here

On the more unexpected level they have also developed significant photographic modeling skills of a tasteful nature as demonstrated in the magazines.

Thank you and keep up the great work!

THE QUESTIONS TO ASK OF ALL CHARITIES

What questions might this raise for the public who are engaging with other charities?

·       How is research forming an accepted and everyday part of a patient's journey?

·       How are you raising awareness about the need and value of research?

·       What are you doing to let me know about research studies that I can join?

·       Do you have a patient/carer reader's panel for the articles that are published in your organisation and on your website?

·       How are the views of patients and the public informing and shaping the work of the charity?

·       How are people with direct personal experience actively involved in the policy making and practice of your organisation?

·       Do you employ staff affected by the condition who may add to the effectiveness and understanding?

·       Do you have a patient as a guest editor for any of your publications?

If you are doing some or any of these I would really like to hear from you...

First response from Jon Spiers from AutisticaUK - A great website with good information about research http://autistica.org.uk

A Social Contract?

This was the topic #socialcontract15 for an event hosted by The Academy of Medical Sciences and the British Academy for the humanities and social sciences which I was invited to attend. 

The model, first described in 2008 by Dr Elias A Zerhouni, former Director of the National Institutes of Health, USA talks about 4Ps - Predictive, Pre-emptive, Personalised and Participatory. 

I arrived, looking forward to listening and contributing to the discussion but then when a speaker was unable to attend I was invited to take their place. 

Here is the talk I hurriedly put together.

"I lost my voice, I found my voice..."

These repeated phrase comes from a work of art from Glenn Ligon, the American artist.

He is not just speaking to me, with my throat cancer experience. He is speaking for, to and with people of different races, cultures, gender and sexuality. He is inviting us to think beyond the usual subjects who are interested in their health and wellbeing. His work is rooted in exclusion and inclusion. 

So, as we explore this concept of a social contract our greatest challenge is to ensure that we do not increase the gap in inequalities. 

It is right and proper that the Academies start from the perspectives of science and medicines but I suggest that the fourth P - Participation - holds the key. 

Too many patients feel they have no voice or have lost their voice in healthcare. We assume we can misbehave, get ill and the NHS is there for us. When we visit the NHS we are told what will happen to us.

Participation is not just taking part as a guinea pig, being given information or told to behave in a certain manner. 

Participation, for me as a patient, is about a series of active, continual dialogues which helps me understand my health and wellbeing. This has led to far less visits to any doctor since I was ill.

A social contract has to be about 'change' in approach, manner and behaviours. It needs to include...

Shared decision making as a real, honest and tangible reality

Rights discussed as a part of responsibilities whilst avoiding stigmatising individuals or communities

Open talk about the costs of healthcare and benefits of prevention

More patients have access to information through the use of new technologies and social media. These factors require a shift in the ownership of health, the balance of control and power.

I work one day a week for the NIHR Clinical Research Network advising on the involvement and engagement of patients and the public. I am often struck by the number of people I meet who have become actively involved talk about having a much better understanding of their health and the challenges facing research, medicines and science. They too talk about less visits to GPs.

By being offered a voice, people are able to inform the research agenda, to influence policy and practice which has helped develop better patient outcomes, avoid duplication and campaign for speedier research and quicker application. 

The public are extremely positive and highly supportive about NHS research as it provides more opportunities to find out about their health. 

The participation is genuine, meaningful and has added value. Our challenge in any social contract is to help us all understand the gains that can be accrued.

Cancer Research UK has recently published their plan Every Patient a Research Patient. 

Let me return to the artist, Glenn Ligon. The title of his exhibition is Encounters & Collisions and I suggest that we need to reach out to Encounter and talk with patients and communities and accept that there will be Collisions. 

Maybe we should look towards all meetings with the public to be opportunities to discuss health more than ill health

Answers, please!

Where might you find answers to these questions in 2015?

• How can the public find out what’s going on in research?
  
  
• How to find out what research has been - or is being - done on specific problems or conditions?
  
  
• What other information is available on the internet?
  
  
• Who can you talk to about research in the NHS locally?
  
  
• What are the different ways in which the public can get involved?
  
  
• How can the public influence research priorities?
  
  
• How can the public influence research ethics?
  
  
• How can the public get involved in commissioning or undertaking research?
  
  
• How to apply for funding for a research project?
  
  
• How can the public get involved in the process of interpreting results?
  
  
• How can the public get involved in disseminating results?
  
  
• How can the public get involved in making sure that the NHS takes account of research?
  
  
• What support is available for the public who wish to be involved in NHS research?
  
  
• Do the public who want to be involved need any particular skills or qualifications?
  
  
• How can you access the training that is available?
  
  
• How to involve the public who are often left out?

Pleas note that for ease of reading I have changed the words ‘consumers’ to the public; ‘R&D’ to research; and ‘InterNet’ to internet in the above examples to bring it up to date.

These questions come from a little booklet I found in my loft recently. Better still, each question had a short pithy answer to help the public.

The booklet is titled...

Research and Development in the NHS - How can YOU make a difference?

It was written, in 1999, by the advisory group Consumers in NHS Research which later became Involve.

So, where is today’s little easy read guide?

How can we all work together to provide this information?

and...are there more appropriate questions we should be?

I would certainly want to add a question about taking part in research, inviting comment about the experience and finding ways to thank each other.

How can we demonstrate the benefits of involving the public in research?

NHS Research and Development North West Catalyst Event

Over 100 people, the public and from research, gathered for an Open Space workshop at Aintree. 

The question for the day was - How can we demonstrate the benefit of involving the public in research?

Each word conjures up many different perceptions and understandings - HOW, WE, DEMONSTRATE, BENEFITS, INVOLVING, the PUBLIC and in RESEARCH?

Let me invite you to think differently by changing one word in that question so that it reads... How can we demonstrate the benefits of involving the public in SPORT?

This change in the question immediately makes us want more information, to seek much further clarification, to be far more precise?

We would probably begin by asking which sport. So what is the CONTEXT?

We might ask whether it personal fitness or part of the team. So PURPOSE is important. Are we part of a team (from cleaning the boots to playing on the field), watching (home or at game), helping (local team or Games events), personal fitness (in general, following illness or accident, loose weight). Ewe need to be far clearer in defining the PURPOSE

How many goals am I expected to score? Am I coaching or driving the coach? Am I helping organise TASK 

I blog as an individual, I may be part of a team when I am working with researchers, I am part of an organisation in my work. 

DEMONSTRATE THE BENEFIT

You cannot measure someone's benefit of taking part in football training if you take them to a badminton game. Yes, there might be a benefit of involving them in sport but it can only be measured against by definition of what they choose to do and how effective it has been. You cannot measure the benefit of watching the game against the physical taking part.

1. Place the involvement in CONTEXT (in terms of the organisation, the research, the people)
2. Define the PURPOSE 
3. Make the TASK specific and produce an EXPLICIT AGREEMENT 
4. Assess the BENEFIT to the research, the researchers and the public

Only then can you effectively ASSESS the value and benefit (research, researchers, public)

1. Football or badminton; is it active involvement or active engagement

2. Am I a supporter, am I playing, refereeing or managing?

3. What is is expected from me and of the others involved? time, costs, commitment

4. Am I fitter? Have I enjoyed taking part? Has my team won? Are we celebrating?

And in all of sport we begin by giving people choices about what the individual wants to do?

Let's, at least be clear about the game, the rules we should abide by and opportunities that we have to contribute and take part in a way that best suits research and our needs. Let us work together to offer a broad range of opportunities to suit the needs of research and those who get involved.

It is also really important to remember those whose voices are least heard and communities who are unrepresented.

Visual recording by morethanminutes.co.uk @visualminutes

http://www.youtube.com/watch?v=4vEBcr_YkHU

http://www.youtube.com/watch?v=PwpQMtTSi5c

Twitter: @NHSNWRD

Linkedin: NHS R&D North West

In Praise of Researchers - updated

...and tips to encourage public involvement

Thanks to all those who tweeted and retweeted about this article. Some of you are mentioned in the dispatch further down the page. This blog post has now been visited over 1000 times in the last few weeks. I have been wondering why this is the case. Your views are most welcome! I think the fact that I have expressed us 'walking together' rather than you must do public involvement; that it is about the shared learning and understanding. Yet, it does seem to demonstrate that we need to just say 'thanks' more often in a busy world. TWEETING - see below.

1. Thank You!

Researchers, in my experience, are good people who receive few thanks for what they do. The recognition they receive is mainly based on the judgement of the number and quality of journal publications but this isn't the same as saying thank you. We should also be thanking many of those who try and fail as much as praising those who succeed because research that doesn't answer a specific question can be invaluable for others treading that path in the future.

Equally, for many researchers, you couldn’t do your work without the willingness, donation and support of the public. The public does not just bring 'experience' to the table and 'knowledge' does not only belong to research. We all bring health experiences to the table and have a wealth of other knowledge that can be shared and used to our benefit.

Tip 1 – Start by thanking each other and recognising the opportunities to be gained from the exchange of knowledge and experiences. It is what we will do together that is important.

2. Researchers Care!

The vast majority of researchers I have met care deeply about their research subject and want to make a difference to patient care. You want to make things better and are keen to understand the public perspective. You welcome help but are not always sure how to ask, who to ask and where to ask.

Some of the best researchers really want to know what is best in order to improve their clinical practice. They see the vital link between research and good clinical care as just sensible and wise. Others in laboratory work rarely get to meet those who are the potential beneficiaries and find it a highly motivating experience.

The public, too, are very keen on research and want to help, so...

Tip 2 – Begin by identifying the things that are important to each of us, that could help improve the research and will motivate us to change things together. 

3. Researchers are Busy!

Many researchers carry out this work on top of their clinical duties. Ideas are thought over, previous research is scoured, proposals are written too often in the late hours of the evening before the draining task of seeking funding.

Researchers want to get the research right, relevant and meaningful so the public are best placed to make sure the research is significant and reaches the right people and communities. 

The public can help but please don't try to do everything at once...

Tip 3 – Make a list of two or three basic tasks that can be achieved in a few weeks to demonstrate the benefit e.g. reading and commenting on the lay summary; advising on the way the recruitment is to carried out.

4. Researchers Jump!           

Researchers are constantly being asked to jump, higher and longer, to follow different regulations, legislation and bureaucracy. They already set a high expectation on themselves and can see involving the public as an added burden rather than an aid.

The public also places high expectation on research and it is only by understanding why some of it takes so long can be really helpful. 

Why is there such an insistence on giving reams of pages in the Patient Information Leaflet? Could we be working together to improve things like this?

The public, being involved, can help to remind the researchers of the difference that has been made because they are not involved on a day to day basis.

Tip 4 - Record what happened, before setting off with a simple realistic plan to involve the public that reaches out into communities rather than relies on one or two individuals

5 Researchers Worry!

Researchers worry about the questions they ask, the various measures they will use, the research method they have chosen. The complexity sometimes means that the real purpose is lost and just too confusing.

The public can be excellent listeners and can provide an external eye, wider perspective and help translate the complicated into plain and understandable language.

The other day I heard from a researcher that it took 3 months longer because he spoke with patients but it was the best 3 months as the research proposal is of a far higher quality.

Tip 5 – Walking side by side with the public helps keep the research grounded and provides a reality check and gives funders and public bodies reassurance.

Last and NOT least

The public might set off to help the research and the researcher but the involvement itself makes a difference...

I came to give a patient perspective and became an advocate for high quality research.

On a personal level I now have a greater understanding of my own health and wellbeing, am more active and have a better diet. My conversations with health professionals are now far more about 'shared decision making'. 


TWITTERING! 

Thank you for all these comments and please follow them all. 
(I took these from Hootsuite so may have missed a few of you - I apologise to anyone I missed but retweet and I will add your twitter contact.)

Some positive words in praise of Researchers...and tips to encourage public involvement @nwpirf 
Partnership and mutual respect. How things should be! @AilsaDon 
Great to this kind of bridge-building @joannacrocker 
Wondering why and how researchers involve the public? @Pen_CRU 
Really resonates with our team. "Walking side by side with public" is exactly what we want @superpiran
Really great blog for all to read, but particularly for researchers! @JPUHResearch 
Another thoughtful and intelligent perspective @LindzBennister 
Thank you for the research praise @NIHRCRN_nwcoast - 
On the button as ever @jeremywhelan 
Appreciating the work of researchers @louca_mai 
This is a lovely article praising researchers for their work @iamboylan 
A great blog! @keeling_michael 
And thanks to everyone who works with me @MEJoBest 
Really enjoyed your latest blog @JohnBaker_UoM 

Lovely blog-post @SalfordRD 

Superb blog post @acgrundy 
Thanks @bcpft_research 

Thanks for retweets:
@matt_westmore @HealthResComms @mickmull @dollyblue3 @Gozde786 @BeyondDiagnosis @LLocock @AntimonyWray @SallyCrowe @Wellcometrust @SimonRStevens @Brunettebridge @BellaStarling @HealthSciences @AntheaMould @NIHRCRN_KSSPPI @ZoeBelshaw @ElspethMather @LeighHibberdine

(There were many more and I shall try to add you later)

Further Reading 

You might want to read the excellent article about the cart and horse by @ActiveKritizen

...and 'Why study data belongs to the public' from @dr_know 

.....and for an example of thanking Researchers have a look at Wellcome Trust 

Health and All for RESEARCH, research for ALL

Why All for RESEARCH, research for ALL?

            Health is not bought with a chemist’s pills

            Nor saved by the surgeon’s knife

            Health is not only the absence of ills

            But the fight for the fullness of life.

The Health Poem by Piet Hein, written to celebrate the 40th Anniversary of the World Health Organisation reminds us that it our health that is key even when we are ill.

All for RESEARCH

Health, illness and wellbeing

Why am I All for RESEARCH?

I am All for RESEARCH because we ALL have questions about maintaing our own health and that of other friends and family. I believe that only good high quality research, that is appropriately regulated and approved, will give us the evidence to show what keeps us healthy, help diagnose our illnesses more effectively and provide us with the best possible care, treatments and services.

I am NOT 'all for research' that wastes time, effort, money, that hides data, that doesn't collaborate but I am still for RESEARCH that sometimes doesn't know what it is doing because many of the great discoveries come about by chance, accident or enquiries into something completely different. 

I am All for RESEARCH taking place in national health services as a part of the patient pathway that takes account of patient need, listens to patient experience is inclusive in design and open in all its processes.

Why are public All for RESEARCH?

Our lives, activities and money

I think we can say that the public are, generally, All for Research. This seems to be evident in the continually increasing numbers who participate in clinical studies, their positive attitudes and good experiences. 

All for Research is clearly shown in the extensive and imaginative range of activities undertaken to help research - from fun runs, races for life, midnight walks, to far flung adventures - most of which with the support of families, friends and strangers. 

All for Research can be counted in the money raised directly in cash, in donations of clothes and bric a brac as well as that raised from walks to outdoor pursuits. 

And then there is the Government's contribution to research by investing tax payers monies. 

...research for ALL

Why should our call be research for ALL and why is it important? 

We should all want to know whether we are receiving the best evidenced based care. I like to know if the health professionals are interested and involved in research because as a networked healthcare community then we, as the public, are ALL more likely to get the best care. We should want for this for everyone.

We all need to do more to help people to know about research and be able to learn more about it. This should include its value and uncertainty.

The Ok to ASK campaign helps to raise awareness and invites the public to initiate the conversation about whether there are any clinical trials available and open for participation. Taking part in research should become a normal and natural part of a patient pathway in any high quality health service. It should be a central part of good commissioning.

There is a lot of research taking place in University Hospitals and in the larger Trusts. There has been an increase in research being carried out in GP Practices (about half of the practices in England) and in Care Homes but there is more to do. It is now possible to see how Trusts are doing in your area.

It is also the responsibility of research to carry out studies in the populations for whom the research is intended so much needs to be done to encourages all cultures and communities to engage with research.

These are just a few of the reasons, I believe, research should be made more available. 

Do you have any others?

Finally, as Piet Heim reminds us this is a fight for the fullness of life.