Better Knowledge. Better Health? Making Research Relevant, Accessible, and Prioritized to Patient Needs.

Better Knowledge. Better Health? Making Research Relevant,

Accessible, and Prioritized to Patient Needs.

Marie Ennis-O’Connor

@JBBC

INTRO #CochraneAdvocate

Equipped Enabled Empowered Engaged

Shared Decision Making (SDM) is the conversation that happens between a patient and their health professional

to reach a healthcare choice together.

• Clinicians have an ethical imperative to share important decisions with patients.

• Patients should have access to accurate, evidence-based information about treatment options and the uncertainties, benefits and harms of treatment.

More than a third of people living with a long-term condition said they were not

given helpful information about their condition when first diagnosed.

Patient Information Forum

“Central to the vision of patient centred care, is the principle of providing a wide range of appropriate, accessible and timely information enabling people to make informed decisions”

NHS England, Liberating the NHS: No decision about me, without me, December 2012

.

Patients can now gain access to citations of more than 12 million medical articles online. online

Filtering the information overload for better decisions

"Where is the knowledge we have lost in information?“ TS Eliot "The Rock

In an age of digitized health information we still need context and expertise to interpret the research.

Role of systematic review in making research relevant, accessible, and

prioritized to patient needs.

25,000 biomedical journals in print.

8,000 articles published per day.

All studies not equally well designed or interpreted.

We Need A Study of Studies

• To summarize evidence from studies that address a specific clinical question;

• To explain differences among studies on the same question ;

• To determine implications for healthcare policy and practice;

• To limit bias.

The usefulness to any source of information is equal to its relevance, multiplied by its validity, divided by

the work required to extract the information.

Slawson DC, Shaughnessy AF, Bennett JH. Becoming a medical information master:

feeling good about not knowing everything. J Fam Pract 1994;38:505-513.

Relevant

Valid

Accessible

Prioritized to patient values and needs

Effective, reliable, actionable

Timely, accessible, understandable

Relevance

“To be relevant we must select questions that need answering, and plan our reviews to make sure the right information is gathered and presented to answer those questions”.

Cochrane Training

How do you know which question is actually relevant and useful to patient

values and practice contexts?

Ask The Patient!

“When it comes to managing a health condition, how do we know what matters most unless we ask those living with it? Knowing what matters most is vital for good stewardship of our finite resources to fund research, ensuring that work goes into seeking answers to questions that patients most want answered.”

Sarah Chapman, Evidently Cochrane

The patient perspective is paramount.

Don’t just include at peer review stage.

Include patient voice from the outset and throughout the review process.

“If a patient/consumer group don't review your proposal you might miss that one important outcome measure. Many researchers are fascinated by P-values and statistical significance. In clinical research, the Patient is the only P we should be evaluating. “ Pete Carr, Cochrane Reviewer

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it” ~ Leonard Kish

The Consumer's Role in

The Cochrane Collaboration

• Co-applicant on research grant applications • Provides perspective by commenting on the "Plain Language

Summary" of the review • Commenting on a Cochrane review of the best evidence on a

healthcare intervention, prior to publication • Commenting on protocols to ensure that outcomes relevant to

consumers are included • Preparing review summaries in plain language • Searching journals • Translation of reviews • Co-authoring systematic reviews of best evidence

Acknowledge appropriately in the published review

The James Lind Alliance brings patients, carers, and clinicians together to prioritise research

questions.

Relevant

Valid

Accessible

Prioritized to patient values and needs

Effective, reliable, actionable

Timely, accessible, understandable

“To him who devotes his life to science, nothing can give more happiness than increasing the number of discoveries, but his cup of joy is full when the results of his studies immediately find practical applications.” —Louis Pasteur

2. Validity

Who is likely to use intervention?

What are their unique needs?

How they are likely to use it?

What resources, and infrastructure exist to support intervention?

Summarise the existing evidence

Address uncertainty

Present findings in a way that informs SDM

Knowledge Translation

Dissemination

Highlight gaps in the evidence

To help people understand and support decision

making

“The success of my research outcomes depends on the success of the patient outcome. They are the key cog in the evidence wheel. At least one of the research proposals primary outcomes should directly impact on patient care. “ Pete Carr, Cochrane Reviewer

Relevant

Valid

Accessible

Prioritized to patient values and needs

Effective, reliable, actionable

Timely, accessible, understandable

“Simple can be harder than complex. You have to work hard to get your

thinking clean to make it simple. But it’s worth it in the end, because once

you get there, you can move mountains”

Timeliness

The Lancet 2009 374, 86-89DOI: (10.1016/S0140-6736(09)60329-9)

Copyright © 2009 Elsevier Ltd

As much as 85% of research investment wasted

“Research results should be easily accessible to people who need to make decisions about their own health…Why was I forced to

make my decision knowing that information was somewhere but not available? Was the delay because the results were less exciting than expected? Or because in the evolving field of

myeloma research there are now new exciting hypotheses (or drugs) to look at? How far can we tolerate the butterfly

behaviour of researchers, moving on to the next flower well before the previous one has been fully exploited?”

Alessandro Liberati, BMJ 2004

Dissemination

Disseminating Research

Active Model

Views people as active change agents rather than passive recipients of

information.

Spreading research through social networks

Passive Model

Providing access to information, but relying on potential users to find the

information themselves.

The Health Foundation: Spreading Improvement Ideas accessed at www.health.org.uk

Articles Conferences

Involving leaders Collaboratives

Social Media

• Twitter forms communities of interest

• May help you clarify your ideas

• Easy to use • Know your Twitter Ps & Qs!

• A tweet chat is a live Twitter event.

• To filter all the chatter on Twitter into a single conversation a hashtag is used.

• A set time is also established so that the moderator, guest or host is available to engage in the conversation.

• Transcript of tweets available after the chat.

Malcolm Gladwell The Law of the Few

Facebook can reach targeted groups But issue of trust and credibility

Multiple exposure to the same message can increase the likelihood that information is shared.

Create content

Track across multiple platforms

Engage Measure results

Repeat Social Media Iterative Process

A Challenge For You

“The patient has been lost in

industrial scale production of guidelines.”

Neil Maskrey

Image: www.delta7.com