Learning and Developing - Blog 2

What do we mean by  'Learning'?

FROM SCHOOL TO...

For many of us, learning remains associated with our school days and the formal acquisition of facts that were subsequently measured in a variety of tests or examinations. The outcome being, for the most part, qualifications and future employment. This approach often assumes that we have little knowledge prior to the educational experience and that we will have gained information as a direct result of the process.

KNOWLEDGE & EXPERIENCE

Patients, carers and members of the public who become involved in research do not necessarily need knowledge in that formal sense. Learning for involvement in research is like walking across different stepping stones. It is rather like the old TV programme Blockbusters, where  a contestant seeks their way across a playing board, knowing some of the letters and guessing at others.

The questions that often need addressing for active involvement are far more basic: What am I doing here? What is expected of me? Why is this of value? What do we each get from the experience? Will it make a difference?

This puts a different emphasis on the idea of learning. These questions place the learner at the centre with their needs as the starting point. 

Members of the public, patients and/or carers do not need to know about all matters relating to research and science or all the issues about health and medicine in order to function effectively. In fact it would entirely negate and defeat the whole purpose of involvement if people needed to learn everything although there are examples of people becoming researchers.

It is their experience, either as a patient or carer. It is the experience gained in other walks of life that can be brought to the table by members of the public.

INSIGHT & PERSPECTIVE

The purpose of involving people is fundamentally to bring the insight of the person who has and may use a service, the carer’s viewpoint and/or an external perspective into any aspect of research from study development to trial management. It is the direct experience and/or different lens that is being offered from outside the normal research community to help add value and maybe bring fresh thinking. The concepts are of informing, forming and influencing research  for an  individual study or in national policy. The wisdom of experience.
A person asked to give their views about a research proposal or consulted about the questions to ask only needs to express their opinion. They may also want to get more involved.

People who get involved do not really need to know anything other than their own experiences and be clear about why they are involved and what is needed. The rest is an added bonus that is made more meaningful by meeting others involved on the same endeavour.

THE OVERRIDING GOAL

It can be of benefit to know that involving people is Government Policy, that it is a condition of NHS research funding and that it is supported by many, many people. It is helpful to know that there are still some people have still to be convinced of its value. It is therefore as much about changing culture and practice as it is about improving research. The overriding goal is about improving the value of people's lives and experiences of health and social care services.

People who become actively involved do need information to assist them in whatever endeavour they are involved. If it is about reviewing a trial protocol the need may be to understand what is being looked at and what is required. If it about membership of a committee, it might be helpful to understand the purpose of the group, how it functions and it's decision-making responsibilities as well as what is expected of the person. It is also important to know and record whether the involvement has made a difference as this will help us measure impact.

It is often the combination of the experiences together with the information that builds a base of understanding that can then be used elsewhere. It is an empirical approach - knowledge being developed and learned through experimentation, observation and reflection.

It can be desirable to understand some basics about research and some general information about health, medicine and science as that language permeates much of the discussion. Not knowing these should never exclude anyone from getting actively involved.

SUPPORT & ADVICE

People do, of course, need some support, advice and help. People need to know how to find the information and knowledge that can assist them understanding the why, what and how of being involved. There is a need for signposting, alongside translation and interpretation of culture and language.

Opportunities for learning help clarify the purpose of the involvement, the impact that is being sought and the expected outcomes. This clarity of purpose can help us all function more effectively.

LEARNING STYLES

We all learn in different ways. These are sometimes broadly divided into hearing, picturing and doing. We learn best through combinations of praise and challenge. We learn more when we have the chance to practice what we have learned. However central to all learning is building confidence, engendering self belief and helping people realise and develop their own potential.

The learner should, therefore, be able to choose from a variety of written information, workshops or self learning manuals. There should be choice about when and where the learner can access opportunities to learn and develop both in person and online.

Learning is about building new skills, experiences and knowledge that can help develop the effectiveness of involvement and the individual. In research, as in other parts of the NHS, is really about developing relationships, partnership working, seeking solutions together, managing each other's expectations and coping with conflicting opinions.

Richard P Feynman, offers a great opinion on learning:

"Study hard what interests you most in the most undisciplined, irreverent and  original manner possible."

LEARNING FOR ALL

This whole approach applies equally to researchers and managers who want to involve others in their work in either partnership or merely a consultative manner. They too need support, information and knowledge to help them understand why they want/need to involve patients, carers and the public in their work.


The next Blog will focus on the needs of researchers and managers about involving people.

Learning & Developing in Involvement - Blog 1

Involve recently held a workshop to explore the ideas around Learning & Development for Involvement across the whole of the National Institute for Health Research. I have begun a discussion group on LinkedIN but wanted to put my own thoughts down on paper. 

Learning & Developing for Involvement in Research - BLOG 1 

A LEARNING CULTURE 

The goal should be for better research that becomes a standard and valued core element of improving health and social care. This means 'change' and that is best achieved by developing a learning culture. This is particularly true around involving and engaging people as an elemental part of a process rather than a Patient & Public Involvement (PPI) product.

ENTITLEMENT

People, whether public or professionals, should be entitled to information, support and offered opportunities for learning and developing their understanding, knowledge and skills for effectively involving people in research. We should focus on the intention, effectiveness and practices of involving people in the each of the different aspects of research design, delivery, evaluation and application. We should be clearer about the specific purpose, intended impact and capture examples of the benefit.

LEARNERS' NEEDS

For learning to be effective it should take account of the learners' needs. The learners' needs should be at the centre of planning, preparation and delivery for all learning. The learning should be identified in joint discussions and tailored to those needs. 

This equally applies to researchers who are unsure how to involve people at a particular stage in their studies as well as managers who are unclear about the value that the insight from patients can give, for example, to whether a study recruits to time and target. Many members of the public may lack knowledge about research but can bring a range of other transferable experiences that can be valuably used to improve research.

We must begin by identifying the skills, knowledge people already have, what is expected of them, how they learn and how it has been effective. We should explore and promote the development of creative and imaginative ways of helping people to learn with a broad spectrum from paper based information sheets, innovative practical activities to self-learning tools and social media resources.

CONTEXT & PURPOSE

Learning should be set in the context of where it is taking place i.e. within the different functions of National Institute for Health Research (NIHR) supporting either study design, commissioning and/or delivery. This helps clarify the parameters of what is expected - what can be changed and what cannot.

The actual purpose of engaging or involving people is a key to the learning and central - i.e. Improving the design of a study might seek to involve people in identifying priorities or clarifying the questions and defining outcome measures; Better delivery of research might focus on targets and recruitment advice; Reviewing Study Protocols might focus on critical analysis skills.

The purpose is not involvement as such, it is the task in front of us.

CHOICE 

It is important to note that learning for involving people is rarely a linear course for those who become actively involved. Knowledge is gained in an experiential manner - a series of stepping stones - where things learned one day get applied somewhere completely different. Many of the workshops sessions are successful because they provide simple activities that enable discussion and networking. We should look to the learning models that exist for 'adult learners' rather than a traditional school approach.

Choice should therefore be an important element of all learning and developing for content, approach and formats - to reflect personal learning styles and opportunities to learn - i.e. a mixture of face to face workshops, peer learning and use of technologies, etc.

REFLECTION

We learn best by doing yet is important to provide time for reflection. It is the simple act of writing down what was done, what was achieved, the benefit of involvement and most importantly what have a learned as a result. It is by carrying out some reflection that we can apply the learning in future. 

Liverpool Care Pathway

Yesterday, I met with people whose loved ones were on the Liverpool Care Pathway. It was a humbling experience and I learned a great deal.

One of the participants spoke about the Duty of Candour and when I sought further information 
and found this on DH website http://www.dh.gov.uk/health/2012/12/duty-candour/

Dementia Roadshows

The Dementia Roadshows are being organised by the Department of Health in conjunction with the Alzheimer’s Society. Either the Secretary of State for Health or the Minister for State will be speaking at each event.

The dates are as follows:

Thurs 7 March North West
Thurs 14 March London and South East
Wed 20 March Yorkshire and the Humber
Thurs 11 April North East
Thurs 18 April West Midlands
Thurs 25 April South West

f you would like to attend please register your details at:

http://dementiachallenge.dh.gov.uk/2013/02/26/dementiaawarenesstour/

 

 

This events are aimed at members of:

- Health and wellbeing boards
- Directors of public health, adult services and local Healthwatch
- Local councillors
- Clinical Commissioning Groups and NHS Trusts
- Dementia stakeholder organisations
- People with dementia and their carers
- Care provider Chief Executives

As well as showcasing some of the best in approaches to dementia the events will ask everyone to make a personal or professional commitment to change – these may include:

 

- Join the Dementia Action Alliance (DAA)
- Sign up to care and support compact
- Sign up to become a dementia friend
- Improve diagnosis rates
- Reduce prescription of anti-psychotics
- Drive public involvement in dementia research

If you would like to attend please register your details at:

http://dementiachallenge.dh.gov.uk/2013/02/26/dementiaawarenesstour/

 

IMPROVING RECRUITMENT - HINDSIGHT, INSIGHT & FORESIGHT

Improving RECRUITMENT using Hindsight, Insight and Foresight

Developing partnerships with the public to increase the delivery of research studies

This was a workshop I facilitated on February 13^th organised by Ros Yu, Patient and Public Involvement Manager for the Joint Research Office - a partnership between University College London, UCL Hospitals NHS Foundation Trust and the Royal Free Hampstead NHS Trust.  The workshop is part of the wider programme of Building Research Partnerships and was open to researchers and the public. The notes below capture the essence of the discussions and are written mainly to advise research professionals.

Involving patients, carers and the public has become a standard and expected element in almost all NHS research. Increasingly, we see examples of patients assisting with the prioritisation of research ideas, helping to shape the research questions and providing insight from their experiences.

The main examples offered here mainly follow a traditional model of Involving the public and introduces ideas for thinking differently in future. in the meantime it has made a lot of research more relevant, improved research outcomes and helped changed the whole environment of research.

But what about the RECRUITMENT?

There are an increasing number of examples of where involvement has made a significant difference to the delivery of research - the action of getting a study up and running in line with the measurable goals of ‘time and target’. There have been few opportunities to sit down and discuss the issues.

The workshop looked at IMPROVING RECRUITMENT under three headings:

HINDSIGHT - How might the public help us understand why has a clinical research or other study has been unable to recruit, so far?

INSIGHT – How might the experience of patients, carers or the perspective of the public to aid the delivery of research?

FORESIGHT – How might we think more effectively about the ‘person’ who will take part in the today’s research and the needs/wants of research participants for the future?

The public can offer valuable advice that can assist researchers in getting sufficient numbers but cannot take part in promoting a particular study. Guidance on this was produced jointly by INVOLVE and the National Research Ethics Service.

Recruiting people to research studies is needed if a statistical significance is to be seen when analysing the results. The targets of recruiting to time and target exist to ensure that research studies in the NHS are carried out in a timely fashion so that the findings can be applied for NHS patients. It was unacceptable that, in the past, it often took months or years to get a trial up and running.

The workshop began with discussion on…HINDSIGHT  

How might the public help us understand why the study been unable to recruit, so far?

Hindsight is always twenty-twenty. We can all look back, see things more clearly, to learn from our experiences but in the midst of trying to get a research study delivered alongside daily work, asking for help can be a good idea. By asking how the public might help allows for a more positive and non-threatening approach. It was Thomas Fuller who said, “A stumble may prevent a fall" (1).

Some researchers held a small focus group to help consider basically two questions:

• What advice might you offer on both the STUDY and the PROCESS? 
• Are there any simple changes in the way something is explained that might make a difference? 

Some researchers carried out simple surveys, others invited patients who were not trial participants to become members of the Trial Management Group. The key is having an external viewpoint that brings a pairs of fresh eyes especially from the patient and carer perspective.

Each approach offers a helpful way of gathering the 'customer' view and using those to alter the way the study is explained to patients. The language research uses is often very different from that of the public in general so it is always worth checking not just the Patient Information Leaflet but the way the trial is communicated on posters and in person.

The second area of discussion was on INSIGHT - for recruitment 

Talking with a group of patients/carers specifically about recruitment during the research planning stage is a good idea. It does not matter whether it is a telephone conference, a Facebook conversation, a focus group or meeting in a coffee house.

A quote from Joseph Campbell says, “Where you stumble, there the treasure lies” (2) yet by having a plan to talk to people you can avoid the ‘stumble’.

Patients and carers offer the wisdom borne of experience. The diagnosis of any disease leaves many people in a confused state and therefore talk of research may be a step too far. It will inevitably raise the importance of the 'carer' who is too often left out of the discussions. The person supporting the patient can do more than reminding the study participant of appointments, medication and other trial requirements. The carer’s view can be a rich source of additional evidence that you might wish to gather. Thinking about the patient, their lives and needs at the point when research participation is being mentioned can therefore help recruitment.

People affected by a condition have knowledge of where best to inform people about a research study. They know their clinics and GP practices as well as the parking problems at the local Trust. This worthwhile intelligence can be the difference between a study meeting the target for recruitment and failure for a very expensive process.

Patients have their own highly complex network of contacts with other patients, through self-help/support groups and in their own communities. This can be a good way of spreading the word about research studies. Different communities, age groups, cultures have their own added value to contribute on values, perceptions and language.

FORESIGHT

“The best way to keep something bad from happening is to see it ahead of time... and you can't see it if you refuse to face the possibility” (3), William S Burroughs.

Values and Attitudes

There are many of us who are actively involved who neither want nor need to see involvement in every part of research. We want to know that the culture has changed, that the research community is thinking of people not subjects and that we are working together in a shared enterprise of improving people’s health.

So, think person, think patient, think volunteer!

• What would I feel like? 
• Would members of my family and friends take part? 
• Could I describe and explain it to someone on the High Street?
• Would I feel informed?

Have a Plan

Have a practical plan of how you intend to work with patients, carers and the public. Don’t leave it to chance!

• CONTEXT – Describe the research and why you want people to participate
• PURPOSE – Explain what you want/need from people and how you will be working together - consultation or partnership
•  IMPACT – Outline how the discussion might help improve research
• BENEFIT – Record and inform each other of the benefits

One of the first points to be raised at any meeting will be that researchers should have spoken to patients and carers at a much earlier stage. I would agree!

Discussions with a patient community at the earliest stage are more likely to reach the right priorities, come up with the most relevant questions, identify appropriate outcome measures, improve the lay summary and help shape an effective plan for involving people.

Participants were given a handout of observations made by Ignatius Maguire a lay representative on a major funding body for government research in Northern Ireland.

The evidence of the impact is growing in public awareness of research, through to the design, delivery and dissemination of studies. Other examples can be found in Making the Difference report and ongoing information can be found at Simon Denegri's Lay Review.

Think to the Future

How might we use social media and new technologies to improve the way we explain research, communicate about studies and publish results?

 

Here are some recent examples I like....

A Guide for Using Twitter for Researchers 

CF Unite - Cystic Fibrosis - Research, care and patients working together

ShiftMS is a social media site for young people with Multiple Sclerosis

Cell Slider - You, too, can read pathology slides

MOOCs - Massive Open Online Courses

 

Thank You

Thanks to everyone who attended the workshop. Please use the tabs at the top of the Blog to find further sources of information and follow me @ppisqueek on Twitter  

What Participants thought of the Workshop

Summary of the Evaluations

The most valuable aspects of workshop were…

• Ways of involving the public in research
• Considering other avenues when approaching the public
• Discussion on research focus v participants focus
• Learning about PPI
• Meeting people in same situation
• Whole event was useful and informative
• Foresight and Ignatius’ advice
• Thinking about PPI in my own research
• Thinking of various populations that can be involved and how they differ
• All areas
• Group discussions – although not always enough lay people
• Good to hear other’s experiences of recruiting participants
• How to engage people in research
• Exchange of ideas with others involved

Participants intend to apply the learning…

• In my own research
• Have an improved sense of where I might find support
• By hopefully writing a grant application with a great PPI section and designing a protocol which answers what patient want to know
• Assist me in setting up a clinical trials group – a ‘general trials focus group’
• Follow Ignatius points & use past tense
• Have much more varied and purposeful involvement
• Better research and enjoy it more!
• Foresight - Organise web groups
• Change communication materials to incorporate feedback
• Will involve patients at an earlier stage of development
• PPI will be more at the forefront of my mind when thinking about grant applications
• Engage the patient group throughout the research
• Send emails and update focus group members about research to help them feel more engaged and understand their involvement
• Involve public earlier in project design

© Derek C Stewart

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Endnotes
1. Thomas Fuller – English Clergyman and Scholar  http://www.yuni.com/quotes/fuller.html

2. "Reflections on the Art of Living: A Joseph Campbell Companion" by Diane K. Osbon, 1991, Harper Collins, NY.

3. Willian S Burroughs Author of The Naked Lunch http://www.goodreads.com/quotes/134938-the-best-way-to-keep-something-bad-from-happening-is

 

 

Learning from the other side of the world

Thanks to Bec Hanley, Twocan Associates for the following...

Cancer Australia has today launched two new online multimedia resources to increase the involvement of people affected by cancer in cancer control efforts.

The two new resources are:

·         the Consumer Learning website which is designed to enhance consumer knowledge and confidence to participate in cancer research and clinical trials. The website contains short online learning modules and video presentations to guide consumers who are seeking to participate in clinical trials and research

·         the Consumer Involvement Toolkit will support CEOs, managers, health professionals, researchers and policy makers to effectively involve consumers in their organisation’s work.  By providing practical, easy-to-navigate and user friendly tools including case studies, templates and other time saving aids such as checklists, these organisations and individuals will find it easier to engage and involve people affected by cancer.

Consumers, health professionals, researchers and policy makers from a range of health organisations from across Australia have been instrumental in developing the new resources.

The Consumer Learning website was developed in collaboration with the Clinical Oncological Society of Australia (COSA) and is available at  http://consumerlearning.canceraustralia.gov.au

The Consumer Involvement Toolkit was developed with the assistance of the Health Issues Centre and was based on the world first National Framework for Consumer Involvement in Cancer Control released by Cancer Australia in 2011.  It is available at  http://consumerinvolvement.canceraustralia.gov.au

www.cancervoices.org.au

www.cancervoicesaustralia.org

Throat Cancer Foundation - Launch

The Throat Cancer Foundation 

This charity has now been launched with very good media coverage from BBC News and the Scotsman newspaper. BBC Radio Scotland and Channel 5 News, amongst others, also covered the launch of the Throat Cancer Foundation.

Jamie Rae, a throat cancer patient, is the Chief Executive and the driving force behind the establishment of a charity which I believe will make a significant difference in the prevention, treatment and care of cancer.
   
As a another throat cancer patient, I am delighted to be so actively involved with this charity and pleased to become its first Chairperson. 

It is now 18 years since I was successfully treated in Nottingham by an outstanding team of health professionals at both the City and Queens Medical Centre sites of Nottingham University Hospitals. My cancer was squamous cell and directly linked to smoking - which I stopped on the day of my diagnosis.

I view myself as fortunate as I received my treatment from consultants who were committed to high quality research, keen to work as a team and willing to discuss my options openly and frankly.  

HPV (Human Papillomavirus) has been recognised as the cause of cervical cancer. More recently HPV is increasingly being acknowledged as a cause of certain cancers which affect the throat. If the current trends of HPV + Oropharyngeal Cancer continues, the number of cases will exceed those of Cervical Cancer by 2020. 

There has been a successful vaccination programme for girls in the UK since 2008. This is delivered through the school system and has ensured that there has been an excellent uptake of the vaccine protecting girls from HPV related illnesses.

The Throat Cancer Foundation is campaigning for a gender neutral vaccination.

As the Chair of the Throat Cancer Foundation (TCF) I would urge people to support this campaign.


You will see that I have also added a link along the top of the Blog to keep people informed about what TCF is doing.

Thanks for the best wishes from so many friends. These are all individuals who are making a difference so please click on those highlighted names to find out out more about them and what they are doing: Christine Allmark, Maggie Wilcox, Chris Curtis, Ralph Goodson, Fiona Fletcher, Malcolm Babb, David Hamilton MBE, Bec Hanley, Jean Gallagher, Michael Moran, Matthew J Cooke and Barrie.