TOUR at TO USE

Do you want to be able TO USE the available research to find out more about your health?

We are often prompted to find out when there has been some report in the media about some new breakthrough in medicine.

Here is an example from 

the Daily Mail OnLine 

Fortunately, there is a great website promoted by the NHS who provided a much clearer explanation of the facts. Unfortunately, too few people know about Behind the Headlines so let others know and add it to your favourite sites. 

But let's go back a few stages. It might be helpful to spend a little time thinking about WHY you want TO USE research.

Light at end of tunnel

Is it...

• to aid your discussions about your treatment options?
• to understand more about the latest research?
• to know more about your health and wellbeing?

and/or

• to help, influence and give to research? (These are the next 3 places on the tour so more in later posts) 

Each is slightly different but having a clear picture of what you want can be helpful.

LANGUAGE WARNING - The next few suggestions take you into Researchland but help is at hand with this online Research Jargon Buster. I use the term Researchland advisedly as it has its own language, culture and time difference.

If you really want to find out directly about the actual research you could start with Google Scholar or with PubMed. Just type in an illness, condition or enquiry and just pick one or two to start with.

These search engines will provide you with loads of papers but very few will have a lay summary of what the study is about or the result.


All of this illustrates one aspect of the 'time difference' in research land. Some areas, like cancer, are very good at providing you with information about the disease and the research alongside the people being treated and those who are trying to find the best treatments.

CHALLENGE WARNING - What can you do individually and collectively to make a difference so that similar, sensible and clear information is available. This is why creating A Research Active Nation is so vital.

But, if you are still not certain about existing research you might like to visit this site where 'uncertainties' are explored

Music Time: You might now want to relax and think about how timely this information is for you.

When I took some information, that I had found on the internet, into my consultation I was pleasantly surprised by the positive reaction but it turned out that my consultant had written some of the pages!

Too often I hear that the standard reaction is raised eyebrows, a few tuts and compete dismissal of any information that the patient has acquired. This is wrong and doctors need to change.

If research is to be of genuine value then we can help change the culture to one of greater shared decision making. Any enquiry we make shows a commitment, an interest, a willingness to find out and be a more engaged in the outcomes for our health and well-being. 

The Next POST is about How to HELP research

Do you want TO TAKE PART in a particular research study?

I

Taking part in research

Ask yourself a simple question!

Where might your next door neighbour begin to to find out about research studies that are relevant to them especially if you weren't around. 

 It is, after all, a NHS constitutional right.  

What about finding out from a hospital?

Imagine if all hospitals, clinics, surgeries and care homes had a leaflet about research. This lovely example from North Bristol NHS Trust now comes with QR barcode which can be scanned by many smart phones to take you straight to the site.

Barts Health NHS Trust in London make excellent use of their website to inform and help people to learn.

And HERE all the ways in which you can you can make a difference are explained.

CHALLENGE WARNING - Take a couple of minutes to look at your local NHS websites and see what is said about research. You might want to write to them and suggest some improvements and point them in the direction of good practice.

AND - check out your own Doctor's Surgery website. Does research get a mention?

Where are the signs?

The idea of having one place where you can go to find out about studies was a dream for many years. But how should we spread the word about this great resource.  

You can even download the App on your iPad here or FIND A STUDY.

CHALLENGE WARNING - Who have YOU told about these?

How easy will it be?

Ok, so now I know where I might find out about taking part in research. But what advice is there to help me?

Cancer is quite good at giving people the questions to ask but we need to get better at providing both general and specific information.

The Leicester Diabetes Centre has a great example for a very specific need.

People do want to take part. 

And a reference to things happening elsewhere in the United Kingdom at the moment you might like to glance at this VIDEO from across the border in Scotland.

Today's TUNE whilst you the tweet links to these posts and include @DerekCStewart

How do we encourage CURIOSITY about RESEARCH for the public?

How do we try to make sense of what we are doing? Can we begin to map and measure what we are trying to achieve by becoming a research active nation?

Research helps explore and answer questions about the best treatments, care and services. It also helps us understand how we might live healthier lives and prevent certain illnesses and conditions. BUT…  

How does the person in the street --- find out, take part, use, help, influence and give to research?

For example, how can someone…

‘Find out’ about NHS research in general and relevant studies

‘Takepart’ in any current NHS research

‘Use’ the findings from research to improve their health and wellbeing

‘Help’ inform and form research ideas, practice and governance

‘Influence’ the policies and legislation surrounding research to avoid waste

‘Give’ donations in samples, kind, time, effort and monies

We are getting better in some areas but too many many people look and leave confused, lost and bewildered banging their heads against a wall.


Our common task should be to help people in each of these areas so I have added a few of my thoughts to each area - but are they right???

So, from Monday 8th I shall begin a magical mystery tour of some places I have come across on the internet. 

I hope you will join me and I invite you add as many other places as possible in the coming weeks.

   

Come in, come in it’s nice to see you. How’s yersel’, yer looking grand

Andy Stewart, in the spirit of the Commonwealth Games, may be an unusual start to this blog but it oddly reflects how it felt being interviewed for Healthtalkonline's latest development about some of the things I have been doing as a former cancer patient in the world of research.


Like Andy Stewart, they were very welcoming. Unlike Andy, they certainly did not ask and then answer the question about my health and wellbeing. 

Healthtalkonline wants to listen to you!

Healthtalkonline gathers patients’ stories and experiences. It was started by two individuals who wanted to share their experiences of being patients as a means of helping others. We have all heard the 'patient story’ being told at any event. It can be a moving and powerful means of understanding the raw experience of treatment and the effects on the individual and their families. 

It is however difficult to find evidence to suggest that any evocative story on its own makes any real long term effect on subsequent care. The examples offered by Healthtalkonline means we can take the patient story and use it with our local communities, workplaces and patient groups.

Healthtalkonline has developed even further and is now looking at active patient involvement in research. 

Come in, come in its nice to see you… This should be the song for research. A welcoming voice, a cheery greeting to take part in research, to get actively involved, to donate time, effort, funds or even human tissue.

The idea of capturing the experiences of many of us who who taken those extra steps to help researchers improve their questions and research proposals, is excellent.  many of those interviews have also worked to change the policies and practices of research to making them more patient friendly and to shift the culture from doing to patients to one which is more of a shared endeavour.

To hear from people who have been involved for less than 5 years is particularly valuable and from some, like Maxine, who have been involved even longer than me

I particularly like the 'overview' which then subdivides the interviews to address particular issues about involvement. 

This resource will be helpful for people getting involved for the first time, it will help the development of active involvement in research and be of use to researchers for years in the future.

I quite like the idea of longevity. The notion that in the coming months, years and centuries we will have a historical record. Imagine if we could have heard from people of the past. Daniel Defoe’s book A Journal of the Plague Year was actually written over 70 years later so, although excellent, it is hardly a first hand account. What was it really like for the patients and their carers, for those who tried to find solutions, to mark the doors and carry off the bodies? 

Although a morbid thought, might we have sought better public health a full century before we did?

And, talking about things that are old you might want to hear my interview!

Voices Raised - DiabetesUK show the way!

Great meeting to Improve Local Services Together?

I attended a fantastic event in Bradford last week where people were keen to develop and improve the connection between patient experience, care, treatment, research and commissioning. Superb resources to engage and involve the public in research and campaigning are highlighted below.

Who was there?

Over 80 people from all walks of life, different backgrounds and cultures attended. They were interested in diabetes care and wanted to make a difference. The vast majority had little or no prior engagement or active involvement with research or commissioning. They were mainly patients and carers from the local population who wanted to find out more.

This was very different from the run of the mill active involvement in research which seems to mainly attract a certain type of individual of a certain background and age.

How did people hear about the meeting?

Some had heard a radio advert, others read about it in the local media. Some had seen a poster advertising the event or had been invited to attend by health professionals and the charity.

This approach to communication, focussing on making improvements in just one medical area made it far more inclusive and open. The expectation upon the attendees was to share experiences within set questions. 

What was the meeting about?

The meeting was titled Improving Local Services Together (ILST). This is an interesting and exciting initiative run by Diabetes UK that simply does what it says on the tin. 

It was so good to see patients, carers, clinicians, health professionals, researchers all working together in the same room with the same aim. There was no apparent 'them and us’. Research was not a separate and distant relation - It was a part and parcel for good care, better patient experience and improved outcomes. 

What was I doing there?

I was fortunate enough to be invited to speak and help with a workshop at the event about how patients and carers might participate and get involved in research.

I speak, all too often, at conferences, events and meetings that are all about research. I know how to speak ‘research’ and have experience of the culture and behaviours inside the research world. 

The fact that this event was about people and their experiences made me realise just how far research has to travel to be really meaningful to the population as a whole.

Who hosted the event?

It hosted by Bradford Teaching Hospitals NHS Foundation Trust  in conjunction with the local Clinical Commissioning Group with the local DiabetesUK Support Group 

This combined approach is helpful for the public and clearly demonstrates that health professionals want to help improve patient care by understanding the patient experience.

Where and when was the meeting held?

The meeting was held at Kala Sangam Centre a vibrant community arts organisation in the heart of Bradford. Great facilities with great atmosphere and food.    

  

Registration began at 4.30 and the meeting started at 5.30pm

It was good to kick start this initiative in a central and accessible venue at a time when most people can attend. I am now following @Kala_Sangam on Twitter.

How was it organised?

Improving Local Services Together (ILST) was ably facilitated by Isla Dowds, who ensured that the main focus of the event was about the providers of health services listening and learning from patients. Isla is the Patient & Public Engagement Facilitator - Patient Experience, Bradford Teaching Hospitals and used to work for the NIHR Clinical Research Network.

A marketplace with different displays and stands   to provide support, advice, and more importantly sharing of experience, ideas and how to improve patients lives through prevention, treatment and research.

The formal welcome was from Dr Donald Whitelaw, a senior clinician and active researcher 

Alex Deveraux, Project Manager, Diabetes UK spoke briefly about the ILST project. I spoke about research and Dr Kulpana Patel and Vicky Wallace from the Clinical Commissioning Group explained why it was important for them.

All of these very brief talks set the scene for a dialogue in smaller group settings.

It was great to see the majority of the time being spent listening to people instead of the usual 'telling the public'. 

Useful Resources

Diabetes UK have a number of very helpful leaflets and guides about how to get your voice heard, how you help shape and influence the decisions they make as a charity. Care, Connect, Campaign

RAISE YOUR VOICE - inviting people to sign up to Diabetes Voices to have a meaningful and relevant say in influencing diabetes care.

INVOLVEMENT IN RESEARCH - a simple folded A3 sheet with information about being an active voice in shaping research, examples of current and recent studies that are taking place along with advice on how to donate to the work of DiabetesUK.

BRIDGING THE GAP - Another folded A3 leaflet extracted from a magazine explained about Grants Advisory Panel and how people affected by diabetes help the charity make good decisions about what research to fund.

REGISTRATION FORM - for people to keep in touch with developments in diabetes care and research. The form offers choices as to what people might be interested in doing to help make a difference. 

The Workshops

In the two workshops we ran we spent a little bit of time talking about the three elements of taking part in research studies, getting actively involved and being engaged in what is happening.

The notes and questions included…

 

• How do we stop research being scary? 
• Need to involve local GPs and hold events in the communities to make research more available
• Encourage students to volunteer to help DiabetesUK
• Build up a list of Ambassadors for research and Diabetes - using people who have been on studies to demystify and explain what taking part means
• Have information about research in all clinics
• Why was Ramadan chosen for this meeting?
• Use dieticians and other health professionals to get the message about research across

The last part of our discussions looked at how the experience of being a patient or carer might be of value to researchers to know what patients need, to help design better research and how to get the results applied to improve people’s lives. 

Anne, a researcher and diabetic even came along seeking help and advice about a piece of research with which she is involved. 

Thank you!

Many thanks to all the people who came along and to Christine Kelly, Trust Research Nurse who helped facilitate the two workshops.

Well done to the people of Bradford who attended the event. It was a real pleasure to meet you and I wish you all the best in the future. Well done to Bradford Teaching Hospitals and the Bradford CCG for hosting the event. Well done Diabetes UK. Well done, Isla!

Improving Local Services Together (ILST) is a brilliant concept that can make research meaningful and relevant to improving people's lives. The model works because it is a true partnership between the communities, research and health professionals. 

And finally

It would be good to see...

• More Hospitals and CCGs taking up this initiative
• This model being applied across many different clinical pathways and showing the relevance of research at all stages of patient experience
• The  approach being cascaded in local communities and groups using local Diabetes Voices volunteers to role out the current model and providing feedback to Commissioners, Providers and Researchers
• More researchers in attendance looking at Diabetes experience as a driver for research
• A closer relationship between local communities and research

Leadership and Patient Advocacy for Research

WHAT MAKES EFFECTIVE PATIENT ADVOCATE LEADERSHIP IN RESEARCH?

Recently, I was invited to give a short presentation at the European Society of Oncology Masterclass on Patient Advocacy in Baveno, Italy. I was a stand-in for Simon Denegri who was moving house and can only say that I hope he moves house on a frequent basis. 

During the event I spoke with a number of people including Jan Geissler, Susan Knox, Markus Wartenberg, Estella Lecointe, Bettina Ryll. Amongst others I would include are Lindsey Bennister and Roger Wilson. These are individuals who have a defined roles in patient organisations locally, regionally, nationally and/or internationally. They are all key Ieaders in the sphere of patient advocacy in research across Europe.

I am therefore carrying out my usual practice of gathering and writing my own thoughts as to what I perceive this term leadership might mean in this context. I have tried to identify some of the observable characteristics as we will need to develop others to take on such roles in the future. I am beginning what I hope will become a dialogue.

My question, therefore, is simple...

How do we empower others, from individuals to groups, to become leaders who are effective in bringing about changes in research leading to better care, treatments and services?

The question is posed as an invitation to add, comment, disagree or at very least begin thinking about what it means for your group or specific condition.



FROM ADVERSITY TO ADVANTAGE

The individuals, I have met, who are leaders for patient advocacy in research have direct personal experience of illness that has become a fulcrum and drive for action. 

They have, however, managed to create a physical space from the experience that has moved them beyond telling the chronology of their personal story. The narrative of what happened is subtly crafted into a refined and reduced summary used only when necessary to set the scene, clarify the facts or to make a point.

Their experience is a raison d'etre for helping others and not a repeated story. Their complete interest is in other people’s current experience and how they might be helped, not their own. Comment, opinion, praise or complaint about their health encounter/s is rarely mentioned.

These leaders have a strong understanding that research is an essential and integral answer to improving patient outcomes. This is especially true in the rare conditions whose work perfectly triangulates research, treatment and support in their meetings and conferences in a way that many others would love to achieve.

I am always struck by the external calmness and assurance of these individuals yet in more quiet conversation there is an internal impatience and steely determination to make a difference. These leaders in patient advocacy have a strong sense of purpose to advance their own group / organisation yet build a strong interdependence with like-minded others.

It may seem inappropriate to some but I would suggest that we attempt to create an advantage for others from what happened to us. By that I mean that we draw upon experience to advantage and not ‘take advantage’.

From ADVANTAGE TO ATTITUDE

This leverage of advantage encourages, I believe, an attitude that is forward-looking and mostly positive. A manner is adopted that allows these leaders to be apparently comfortable in many different settings - patient communities, health professionals, academic and clinical leaders to departments of health and government representatives and ministers.

Leaders adapt to assimilate within these settings and promote dialogues whilst remaining clear about their role and thereby retaining a certain distance. They are willing to join the dots at different levels and in different places, learn and translate the information elsewhere.

There is a desire to find how to be effective and add value to research. Inquiring minds and reflective thinking are evident in the use of questions and the comments they make. These leaders listen and learn and are unfraid to express an opinion even if it is uncomfortable to others.

In many respects my own experience gave me a freedom to express my views. I felt was less encumbered and concerned with what others thought and more able to live life to the full. The change in attitude changed the way I behave.


From ATTITUDE TO ACTION

One of the strongest characteristics I have observed, particularly for effective patient leaders in the context of patient advocacy is that they get on and get things done.

Policies and strategies are a means to an end not a laborious and long drawn out process. They get to the point quickly to make a difference for others even when the change takes a long time. Partnership working is normal yet does not detract from completing tasks. Difficulties are to be addressed, overcome and challenged to find solutions not an excuse to give up or do nothing. Websites, emails and other forms of social media are used to communicate with a broad variety of people.

These leaders act as catalysts to bring together senior academic and clinical researchers with scientists, patients and their carers. The meetings I have attended especially for rare diseases are about knowledge AND experiential transfer and not about information giving.

These are people who ask questions that invite people to find a solution. The use of confrontational questions and statements are used rarely and only after significant and lengthy dialogue.

There is strong evidence of the use of transferable skills, knowledge and experiences from competences and success developed in other fields of personal and professional experience. The leaders appear to translate an issue into another context to help interpret meaning or help others understand.

I have often thought that my experiences as a teacher supporting challenging young people was a good background. Behavioural change is as important for the school staff as it was for the young people and lies at the heart of developing a better relationship between experience and expertise.

So, what are your views? What do you think we should be doing to grow 'patient leaders for research' for the future?

Developing a Charter for Research

The following notes represent some very initial thinking and will probably go through major changes. 

The NIHR Clinical Research Facilities (CRF) held its 10th Annual Conference in Sheffield (Twitter #crfconf14). 

I was invited to give a very short presentation about the work in the Clinical Research Network and to consider how we might move towards a Charter for Patients.  

In writing these notes I decided not to start from the 'patient, care and public involvement' perspective. I have chosen instead to think about improving research and a set of principles that we might have in common. 

I found the Athena Swan website 

http://www.athenaswan.org.uk/content/history-and-principles very helpful. 

The Context

The public and clinical research working together to improve research - the policy, process, experience for the improvement of treatment, care and practice. Partnerships taking place within an appropriate, responsible, ethical and regulatory framework. 

The Principles

That research is viewed as a process done WITH the public rather than TO the public

Research is for everyone and in all aspects of its work reflects the diverse richness of our communities

Research forms a standard part of the patient pathway with every clinical encounter offering an opening to assist research. 

Research - people and environments are friendly, approachable and supportive with high quality information and advice

Patients and their families are encouraged and enabled to ask about research and find out about the opportunities to help take part and get actively involved

Patients, families and health professionals able to develop their research literacy to empower them take part in shared decision and better health

Learning, developing and sharing their understanding and knowledge of research is central to good practice and innovations

Research processes and structures should be open and transparent with choices to inform and influence