Lives unaffected by cystic fibrosis

Research & Advocacy Priority Setting

Research and Advocacy Priorities Proposal

April 2020

In 2020 the Australian Cystic Fibrosis Research Trust (ACFRT) and Cystic Fibrosis Australia (CFA) will be rolling out our Research and Advocacy Priority Setting program to roadmap the next five years of cystic fibrosis (CF) research funding and advocacy.

The ACFRT and CFA are committed to expert consultation and informed decision making, but we recognise no greater authorities than those Australians living with CF and their care teams. People with CF and their support networks are the ones our actions will impact the most. We are here solely on their behalf, we work to crystallise their desires and intentions.

Today the cystic fibrosis advocacy community knows its power better than ever. In the last few years we attained a succession of victories at the national level, securing funds for KALYDECO, ORKAMBI and SYMDEKO.

We are seeing increased life years for people with CF and huge dividends in symptom relief. We owe these blessings to the availability of cutting edge CF medicines like the CFTR modulators.

We are also enhancing the efficacies off of clinical care across Australia. As with everything we do, we are committed to visibility and equality of access for Australians with CF.

It is a time of great optimism for our ongoing quest but we must consistently concentrate our resources and energy on the most practical and tangible goals.

We also live in uncertain times when viruses can cause a Pandemic that stops the world. Should we have seen this and how do we prepare for future hurdles? How do we address ‘care pathways’ and health equity?

Cystic Fibrosis Australia is a respected voice in the health sector but we do not go in for unilateral plans. We belong to a Symphony, we are not a One Man Band.

Who: In the last 30 years, the ACFRT has funded more than 300 projects to the value of $6.5 million.

All projects by the ACFRT are peer reviewed by our excellent medical and research partners from across Australia.

Since 2016, all projects have also been reviewed by a panel of consumers. Consumer Research Panels are no fad, they are the crucial ‘earthing wire’ that makes all of our projects meaningful and helpful to our constituents.

The National Research and Advocacy Priority Setting initiative is consumer focussed by definition, but we always seek to blend quantitative and qualitative sources. To that end we will be working with professional adjudicators and researchers to ensure our data is robust and well analysed.

What: The National Research and Advocacy Priority Setting initiative will take place in multiple stages over 12 months. 

The first stage is our initial survey in April this year. The survey will go out to our broader community via the CFA database and social media. Copies will also be available through all our online channels including the CFA website. It is a fully public process in which people with CF and their support networks are encouraged to paint their picture of the condition and its most urgent challenges. 

However, we are not distributing a blank canvas. After expert consultation we have laid out the complex workings of cystic fibrosis in an accessible and expansive framework. This encompasses the realities. For one thing (among many), the disease is broken down by region of the body where each associated symptom or concern has clinical and research goals. 

As far as we are concerned, anything less than a lay, medical and researcher community-wide dialogue about the real ‘nuts and bolts’ of CF treatment would be a slight on the accrued expertise of our CF people. We are not interested in condescending to our constituents or presenting them with bland oversimplifications.

At the same time we are committed to feedback, which is where we come to Stage 2. When the completed surveys have been collected (along with any comments), this data will contribute towards the configuration of a second survey that goes into more depth on areas that our community flags as high priority. This will also be an opportunity to clarify elements of the original survey that did not shine through in the first round. This second-round survey will be collected and the data compiled by experts.

The third stage of the process will be a face-to-face Think Tank forum. We will bring together voices from across the entire Australian CF community - medical, research and lay. The whole exercise will amount to something of a miniature convention, however, crucially, we will have the collected voices of hundreds of CF people in the form of our survey data and this is what will drive our Think Tank discussions.

The findings of the Think Tank summit will be distributed for consultation to the CF community and from that feedback our Research Priorities will be set for the next five years.

The priorities list will be formulated into a digestible and coherent manifesto and published by the ACFRT on the CFA website.

When: 12 months, beginning in April 2020. The first survey will close on 30 June. The second survey should be released in September 2020 and the timing of the Think Tank will depend on COVID-19 restrictions. We hope to share our findings at the Australian Cystic Fibrosis Conference in Hobart in 2021.

Where: The Survey will go live across Australia via our online channels. The Think Tank summit will be hosted in Sydney by one of our generous partners.

How: Our methodology involves a combination of quantitative and qualitative survey data being distilled into a draft priority roadmap and submitted to a council of lay, medical and research experts.

Why: Lord Camden famously said, "Taxation without Representation is Theft." At CFA we believe that Representation without Consultation is Ignorance. We cannot possibly achieve the best outcomes for our community if we simply assume what their goals, aspirations and even personal tribulations might be.

Conclusion:

Setting priorities for CF research and advocacy is essential to maximise the impact of the ACFRT and CFA’s investments.

It is also possible to address diverging principles or values between different stakeholders and disciplines in a fair and legitimate manner.

CFA will ensure there is equitable involvement of stakeholders and appropriate representation of different areas of expertise. We hope to achieve a balance for patients and regional participation.

Different sectors and constituencies that could be involved include partners, parents, siblings, grandparents, carers, colleagues, friends, medical specialists, allied health, clinical trial investigators and researchers. Researchers and clinical investigators will be required to leave their ‘specialty area’ at the door so discussions don’t become derailed.

Broad stakeholder involvement is beneficial for the outcomes of a research and advocacy priority setting exercise for several reasons:

  1. Minimise the chances of research and advocacy options being overlooked as different groups of stakeholders tend to prioritise differently
  2. Fosters ownership of the established priorities among those involved, in turn increasing the chances of implementation of the priorities
  3. Allows priorities to correspond with the needs of those who will implement and those who will benefit from the research priorities, increasing the credibility of the exercise and the potential impact on health and health equity
  4. Prevents unnecessary duplication of prioritisation efforts and wasting of resources.

 

Transparency increases the credibility and the acceptability of the final result.

Click on the link to complete the Research & Advocacy Priority Setting Survey: https://www.surveymonkey.com/r/F38Q8K2

If you would like to be part of the Research and Advocacy Priority Setting process, please email [email protected].