Tuesday 10 July 2018

Why do we, as patients, have to prove our worth?


Evidence of IMPACT is increasingly being mentioned when we talk about patient and public involvement.

But, why do we have to prove our worth? Why should we have to gather evidence to show the difference we have made? We don't expect the clinician, the statistician, the methodologist, the data manager to prove their worth in the research process. We don’t say - why are you here?

One of the first things most researchers do…is a literature review. They naturally want to find out what is known already. They often start with what is published in Peer Reviewed Journals. 

If there is NO mention of how patients and the public have been involved then in the reality of research there is NO Patient & Public Involvement. 

I exaggerate, but there is an element of truth that if there is no evidence then how do we know. The others, I mentioned have over years shown their value. We must do the same.


We make a real and tangible difference...

To Individual research studies
  • Enriching the reality of the research - the priorities, relevance, and value
  • Informing the design of the study - outcome measures, inclusion measures, Patient Information Leaflets
  • Improving the doing of the study - advice on where to promote and recruit, membership of trial management and even co-applicants
By talking about Research
  • Raising awareness about research in general through the Research Ambassadors initiative
  • Increasing access and provosinh more information about research 

For Patients, Public and Healthcare Organisations
  • By being Active in these changes
It is more than just making improvements to the research and doing studies.

It is about research under-pining and being a part of the normal patient pathway. My own story bears witness that the knowledge of research, experience of treatments and the patient discussing the options are the important elements.

It is about making a difference to the individual study and the researcher, the broader aspects of access and recruitment as well as the general direction of intertwining high quality research as part of good clinical practice.

We are seeing the movement of research from academia, though clinical care to being a serious patient asset.

We, as patients, should expect, seek and maybe sometimes demand more. 

Our questions should be about the research, the evidence as well as being able to participate. Some of the KEY Questions are highlighted in the box. 


Are we making a difference?

The following notes are based on a Workshop in Coventry - Impact is not just about counting things. We need the evidence in story form, photographs and videos about...

  • Before and after Patient Informational Leaflets - examples of the how language changes from medical to plain English, how the layout of a leaflet alters, the visual diagrams that have been added, maybe even the use of other media
  • Simple personal diaries asking people's expectations of being involved at the beginning of a project then at some intervals
  • Reporting of the why, what, how of the Involvement with illustrative instances of improvements
  • Preparing a simple evaluation sheet with grades to note information, knowledge, experience, confidence
  • Making a case study of a person or group's involvement
  • Booklets on the Involvement - CRUK
  • Social media summary around a particular discussion 


We must also ensure that the story of the involvement is mentioned in dissemination, on posters and in publications. 

Many of these changes are about the day to day PRACTICE yet we should also be looking at the shift in CULTURE (people's attitudes) and the CLIMATE (people's behaviours) 

We must see the Patients Included accreditation for every event.


Sunday 8 July 2018

What might IMPACT look like?

What might IMPACT look like?
Please also check out this page as well


This is the question I posed at a workshop at 

Coventry and Warwickshire University Hospitals Research and Development Summit 2018 

#rdsummit2018 @UHCW_RandD @nhsuhcw



The workshop was publicised as highly interactive and informative. Hopefully is was fun and safe learning with colleagues.

DIFFERENCE

Participants were invited to form small groups. Each group was given a card providing a separate scenario yet with the same question. Each card reflected different aspects of involvement: planning an open day, advising on patient info leaflets, commenting on outcome measures, membership of a trial management group.

The question was simple: What difference might this make?

The responses varied from the principled to the practical. They speak about being more patient friendly and about making a real difference.

It is interesting how we have all become better at explaining the why, the what and even the how of actively involving the public in research as the responses below illustrate.


The second task was about capturing the IMPACT. By some stroke of fortune, I had just attended the workshop led by @julieEbayley and got this lovely quote: “IMPACT is the provable benefits of research in the real world.

The purpose of the second task was to invite the participants to think about what schools refer to as primary and secondary evidence! In other words how can we demonstrate the difference we have made.

The groups came up with some great examples of the difference involvement might make and the ways in which we might measure the impact.


Involvement in Priority Setting



The difference of involving patient/public in priority setting might be that the focus and direction of travel will change from academic priorities to public. By including patients we might increase public understanding and in turn gives us chance to inform people on benefits for patients.
Patient involvement needs to be done and to show a demonstrable difference.


The IMPACT might be measured by having…

A summary of ideas offered by patients/public and how the priorities changed
An evaluation of how priorities have shifted over time from academic to public ownership

Involvement about Patient Information Leaflets

The difference of involving patient/public might be that our leaflets are more Patient Friendly. We might make less assumptions.  It allows researchers to understand what the patient needs e.g. Is it acceptable to the patient?; Does it deliver the right information?  The answers might help validate the research and help with answering questions at ethical review.

The IMPACT might be measured by showing…

The before and after versions of the leaflet
Examples of where the medical jargon has been altered to make the language more relevant

Involvement with Outcome Measures

The difference of involving patient/public might be that the measures are more meaningful and have realistic expectations. It might help tackle patient opinions and perceptions on outcomes and increase transparency about the research. It can also help the researcher communicate about the trial in a more friendly manner. Equally, it challenges the researchers by having the patient present.



The IMPACT might be measured by having…

A different focus of the actual measures (ie more meaningful, realistic, patient friendly)
Examples of the original measures compared with later version


Involvement on a Trial Study Group
The difference of involving patient/public might be that the Group gains the different perspective - a greater patient relevance. It may help with the explanation of the way a study may need certain design and with locations of data collection. It may assist with the ethics - helping overcome possible risks to patients by already having their views. Involvement in governance allows us to explore how important to patients are adverse events. Yet, how representative of population are they? How do we address the challenge of wider reach and how to communicate/ methods of research- social media may not work for all.

The IMPACT might be measured by having…

Examples of the modification of the study design which came from the patient partner
Personal account from the patient about their involvement
A separate report of the patient & public involvement throughout the trial


Involvement for a Research Open Day


The difference of involving patient/public might be that we gain ideas on what patient and public really want to see. It helps us have a patient centred approach and brings the real world to our planning with an honesty and directness.  We learn about where they can get involved - eg the inspiring nature of patient stories.  The involvement can help increase access to the event, raise awareness and help with the dissemination and evaluation. All of this helps dispels the myths about research and connects the clinical to the outside world




All of these help change the culture: make research relatable; reduce the tunnel vision of academics/ clinical staff; remind us why we do research; cultivate transparency; ensures right people and right place; helps research have more impact; Inspires - provides empathy. It gives us the alternative perspective by involving the people whose lives we are trying to improve. We learn, researchers and public, as to how research effects each other.

The IMPACT might be measured by having…
A Evaluation of the Open Day with feedback from patients 
More people getting in touch and demand for the next event
Greater enthusiasm from both public and researchers















If only we had more time….

(The following notes are from the plans for the workshop which we didn't manage to get done)



LEARNING 

The third task was intended to get people realising that the gain from patient and public involvement isn’t just to enrich the research. As patients we learn loads of stuff about the science, the questions, and about our own health and well-being.

The Q. was to be: What might patients/public learn from being involved?

I am currently a member of the Steering Group for the PRioRiTY ll - a group of trial methodologists looking at the uncertainties around trial retention. As patient partners we decided to ask ourselves various questions about our involvement at the beginning and half way through the study. We have started to summarise the comments and will continue until completion.

STANDARDS

As we define and record our activity it is important to set our involvement with the National Standards for Public Involvement. This means we can measure our activity with that of others to compare and contrast; to ensure we are effective and to improve.

Participants might like to read about these and reflect on how they might be developed.

REPORTING AND PUBLISHING

Almost all research, begin with search about what is already known - a literature review of published papers.

The final task was intended to ask participants to think about how they might report the patient and public involvement activity within the research, with colleagues and to the wider community.

You may want to consider submitting a document on the NIHR Involve websiteand/or producing a paper for the journal Research Involvement & Engagementjournal