Setting An International Research Agenda Report of the Aphasia United Working Group

Original Aim: Set an international research agenda There is a need to: Combine existing knowledge Develop processes for transferring knowledge across cultural and national boundaries Identify research need areas that can be productively addressed by the international community. Role for Aphasia United: Combine the perspectives of researchers, clinicians, and consumers in determining international research priorities.

Background: Aphasia United Summit 1, 2012

Clinical research is experiencing the same globalization as other industries Globalization of clinical research may – reduce research cost – shorten the timeline for clinical testing and implementation – Provide basis for multinational trials, expanding applications, population characteristics – Facilitate transfer of knowledge across cultural and national boundaries (Glickman et al, 2009)

Could an effort to “globalize” aphasia research have these benefits?

Current challenges for clinical research (1)prioritizing of clinical research questions, (2)the divide between clinical research and clinical practice, and (3)the globalization of clinical trials. - National Academy of Sciences, 2010

Does the societal burden of aphasia match the research focus? (after Lawn, Ruden, & Rubens, 2008) What are the costs of aphasia to society? – Long-term health – Recurrent stroke – Work loss/disability support – Depression/mental health costs Caregiver burden? – Caregiver health – Social support What is the focus of research? – Does it address costs to society? Benefits of treatment to society? – Does our research show effects to long-term health? – Does our research show effects on productivity? Depression and its costs? What about the societal costs of caregiving?

“Cooperation among a diverse group of stakeholders—including research sponsors (industry, academia, government, nonprofit organizations, and patient advocates), clinical investigators, patients, payers, physicians, and regulators—is necessary in conducting a clinical trial today.” - National Academy of Sciences, 2010

Stakeholders Researchers – Potential biases: funding availability, professional merit, publication bias, treatment acceptability (Tallon, Shard & Dieppe, 2000; Ahmed & Palermo, 2010) Practitioners – Need to know best practices for clinical questions Consumers – Have their own perspective on what’s important in research – World Report on Disability: People with disabilities should play central role in issues that affect them

General purposes of a global research agenda Address research issues that substantially affect the lives of people living with aphasia Build knowledge across nations Conduct research needed for effective policy- making Provide the intellectual landscape for capacity building

Knowledge building across nations Share existing knowledge to clearly identify shared need areas across nations Consolidate and maximize research resources across nations Disseminate knowledge and resulting best practices across cultures and nations – Including information flow to places with fewer resources, equalizing access to best practices and best policies/community supports

Concerns about global research: – Ethical considerations and protection of human participants – Transparency and publication of results – Training and experience of investigators – Regulatory oversight

A global research agenda for aphasia Who? – All stakeholders: researchers, service providers, consumers, policy-makers, funders, organizational leaders What? – Identify research priorities, marshalling existing knowledge sources

A global research agenda for aphasia Where? – Locations of greatest need Geographic needs Population/demographic needs When? – Research needs across the continuum of care (acute, rehabilitation, long-term, etc.)

Key founding principles Involvement of all stakeholder groups Recognition of commonalities as well as differences across countries, regions, contexts Building on accumulated knowledge and evidence that is broadly applicable Capitalizing on strengths and developments within specific countries/regions

Research Priorities Working Group Marion Brady EU Cost – Collaboration of Aphasia Trialists, UK Janet Brown American Speech-Language-Hearing Association, USA Brooke Hallowell Ohio University, USA Katerina Hilari City University London, UK Jackie Hinckley University of South Florida, USA Fabi Hirsch Aphasia Center of Tucson, USA Simon Horton IALP Aphasia Committee, UK (continued)

Research Priorities Working Group Keith Lincoln Sweden Stacie Raymer Old Dominion University, USA Margaret Rogers American Speech-Language-Hearing Association, USA Miranda Rose LaTrobe University, Australia

1. Research Priorities: Initial Themes Collaborating across countries, datasets, researchers – Developing international research networks – Means of resource sharing – Example: Collaboration of Aphasia Trialists (Marian Brady) Means of considering cultural and linguistic adaptability and adaptation of research approaches in target contexts Promoting aphasia research capacity in underserved regions (especially through volunteer training and community-based services)

Research Priorities: Initial Themes Means and tools for successful collaboration between people with aphasia and researchers – Example: Horton, et al, 2013: Barriers, enablers, practices and outputs of involvement: stroke survivors with aphasia as collaborators in a clinical trial. Importance of qualitative research and involvement of consumers – Example: Lincoln, The Global Aphasia Research Project Promoting aphasia research capacity in underserved regions (especially through volunteer training and community-based services)

2. Sharing examples Example #1: Boivin et al, 2014 Involving patients in setting priorities for healthcare improvement: A cluster randomized trial Implementation Science Example #2: Pollack et al, 2014 Top 10 Research Priorities Relating to Life After Stroke – Consensus from stroke survivors, caregivers, and health professionals International Journal of Stroke

Example #1: Boivin et al, 2014 Controlled trial: Communities were required to set priorities for primary care – With patient involvement – Control: Without patient involvement – N = 179; six different communities Primary outcome: agreement between clinicians and patients

Example #1: Boivin et al, 2014 Results: Clinicians and patients: – Access – Self-care – Patient participation in decisions – Partnership with community organizations Priorities were different when clinicians and patients collaborated Clinicians only: – More emphasis on the technical quality of single disease management

Example #2: Pollack et al, 2014 Method: 1.Establish alliances 2.Gathering treatment uncertainties via surveys (n = 97) 3. Checking treatment uncertainties to ensure that they were unanswered questions 4. Interim prioritization by original respondents 5. Final consensus meeting (n = 28) Three Groups generated priorities; combined rank orderings

Top 10 Research Priorities About Living with Stroke (Pollack et al, 2014, International Journal of Stroke) 6. What are the best ways to manage and/or prevent fatigue? 7. What are the best treatments to improve balance, gait, and mobility? 8. How can stroke survivors and families be helped to cope with speech problems? 9. What is the best way to improve confidence after stroke? 10. Are exercise and fitness programs beneficial at improving function and quality of life and avoiding subsequent stroke? © J. J. Hinckley

Top 10 Research Priorities About Living with Stroke (Pollack et al, 2014, International Journal of Stroke) 1. What are the best ways to improve understanding (cognition) after stroke? 2. What are the best ways of helping people come to terms with the long-term consequences of stroke? 3. What are the best ways to help people recover from aphasia? 4. What are the best treatments for arm recovery and function? 5. What are the best ways to treat visual problems after stroke? © J. J. Hinckley

What would research priorities be for aphasia?

Research Working Group: Next Steps 1. World-wide “rolling summits” – Methods similar to Pollack (group rankings), or NGT or Delphi techniques – Each country hosting their own process and summit – Supported in some way by AU?

Research Working Group: Next Steps 2. Best practices for involving people with aphasia into research collaborations – Guidelines – Case examples of existing projects around the world 3. Tools to develop capacity among people with aphasia for collaborating in research – It’s a two-way street; people with aphasia also need some research tools

For Discussion: Our Working Group has identified three possible actions for AU: 1.“Rolling Summits”: Is this feasible? Perhaps a toolkit to be used in different countries to support identifying aphasia research priorities in each? 2.Best Practices for Involving People with Aphasia: Begin to collect case studies, then identify practices across examples? Make available on website? 3.Tools for developing capacity among people with aphasia: Same process as #2 – begin by collecting case examples

Discussion Of the three identified actions (rolling summits, best practices, toolkit for research capacity in persons with aphasia): – Is there one that should be targeted first? – What would be the best process for achieving the first action? – What outcomes can we target? Initial outcomes? Longer term outcomes? Other ideas?