well springboard proposal_final_041513
TRANSCRIPT
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WellSpringboard: A Prototype for Patient-Researcher Matching
A Proposal for the PCORI Patient-Researcher Matching Challenge
Principal Investigator: Matthew M. Davis, MD, MAPP – University of Michigan
Research Team Members: Anna Daly Kauffman, BA – University of Michigan
Dianne C. Singer, MPH – University of Michigan
THE INNOVATION
WellSpringboard is a novel, dynamic, online universe that champions meaningful and
comprehensive public engagement in patient-centered research, through which:
(a) individuals and communities will propose questions and problems for future research
and invite other members of the public to endorse, financially support, and volunteer
for the research to follow;
(b) researchers will apply to receive funds raised through public support of research ideas,
and vetting of applications will include scientific review and review by members of the
public in order to determine patient-researcher ‘matches’;
(c) researchers funded through matches will be accountable to the public for their work,
their findings, and suggestions for next steps.
WellSpringboard builds on the best examples of engaging, crowd-sourced platforms to bring
their strengths to the world of patient-centered research. Unlike existing platforms,
WellSpringboard invites researchers to join the virtual exchange of ideas that attract broad
popular attention and investment – facilitating a scientifically rigorous review that involves
members of the public. The public is also invited to participate in research supported through
WellSpringboard, and researchers are expected to inform the public of their progress and their
findings – thereby promoting development of future ideas and keeping the cycle of patient-
centered outcomes research moving forward in a rapidly transformative way.
ADDRESSING THE PROBLEM OF LIMITED PUBLIC ENGAGEMENT IN MEDICAL RESEARCH
The world of medical science leaps ahead when the public plays a part. Even the most elegant
insight in a laboratory must, before it can improve human health, be tested for safety and
efficacy in humans. Even truly transformative technological breakthroughs must incorporate
considerations regarding ease of use by patients before they can be widely adopted. Among
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equally promising clinical innovations, the one that is more patient-centered in its approach will
have a natural advantage in its dissemination.
In other words, the process of medical research must invite, involve, and integrate the public
with the efforts of researchers. Yet, as shown in investigations conducted by the
WellSpringboard director (Davis, Clin Trans Res, Jan 2013), the participation of the public in
clinical research—the predominant role of the public in scientific advancement to date—is
limited. One of the key obstacles to public participation in research is individuals’ and
communities’ concerns and suspicions that researchers—whether in academic or corporate
settings—are taking advantage of subjects’ cooperative and collaborative spirit. Such concerns
are natural where uncertainty is involved about the benefits and risks of a new medical
approach; they are amplified by known transgressions of trust by researchers in such cases as
the Tuskegee syphilis study and the Henrietta Lacks cell line.
As a research team, we share a conviction with the Patient Centered Outcomes Research
Institute (PCORI) that the balance of participation between patients (the public) and
researchers must be disruptively altered—in order to advance medical research in ways that
enhance trust, expand potential ways for the public to participate, and embrace innovation.
Specifically, our proposal is based on 3 principles:
(a) Involving individuals and communities from the very earliest moments of idea formation
and study imagination will engage the public more deeply in the medical research
process. Current efforts to match researchers and the public—generally described as
‘research registries,’ for which the leading example is ‘ResearchMatch’ conducted by
Vanderbilt University—generally provide an opportunity for researchers with funded
studies to recruit potential research subjects, but do not invite the public to suggest
research questions. ResearchMatch and other similar, centralized efforts are indeed an
improvement on the comparatively scattered world of subject recruitment in the past.
However, the researchers-first/patients-second asymmetry in today’s research
‘partnerships’ may explain why research participation rates are as low as they are, and
also why public interest in signing up in research registries is even lower (<3% nationally
in a recent national survey conducted by the U-Michigan study team; unpublished
manuscript).
We propose to involve patients and the public directly in the process of developing
ideas for research—as a way to crowd-source the next wave of innovations in medical
research, drawing on real-world insights from the minds and communities of the
public who stand to benefit most from such future research.
(b) The public has the capacity to participate in research more broadly than solely as
subjects. While the role of clinical subjects is vital for the public to play, the public has
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the capacity to bring their experiences and enthusiasm to the research enterprise in
other key respects that have rarely been tapped previously. The public can be
originators of ideas. They can play the role of micro-venture capital investors, offering
to support worthy ideas in small or big ways, similar to the process used by the
‘Kickstarter’ website for non-medical and non-health ideas. Kickstarter is a novel
startup named one of the 50 most innovative companies in 2012
(http://www.fastcompany.com/most-innovative-companies/2012/kickstarter), because
of its unique platform in which – in the words of its CEO Perry Chen – “People are
supporting projects because they want to see them happen” (Behrens A. This is my
brain on Kickstarter. NY Times. March 7, 2013. Available at:
http://open.blogs.nytimes.com/2013/03/07/this-is-my-brain-on-kickstarter/). The
latest data from Kickstarter indicate that the site has led to target funding for nearly
40,000 projects, for a total funding sum of nearly $500M
(http://www.kickstarter.com/help/stats?ref=footer). While many projects funded
through Kickstarter have set funding goals of <$10,000, a growing number have been
more ambitious and the successful projects include over 3,000 projects that have
successfully raised $20,000-$99,999 per project, over 500 that have raised $100,000 to
$999,999 per project, and more than 25 that have raised more than $1M per project.
However, Kickstarter does not offer a venue for funding ideas related to health or
healthcare. A website focused on health that appears similar to Kickstarter is Medstartr
(http://www.medstartr.com/), but judging from the posted projects Medstartr has
much more modest goals than Kickstarter (successful projects with funding <$5,000).
Furthermore, Medstartr and Kickstarter also are notable for a failure to engage
investigators in the health research community – precisely the expert audience that
must be engaged in order to carry a novel idea into the evaluative realm that can then
facilitate transformational change and improved patient-centered outcomes.
With WellSpringboard, we propose to build on the strengths of existing crowd-sourced
platforms and take the next step – by creating valuable links to the researcher
community (see more details section (c) below). Moreover, the public can offer to
participate in each other’s research ideas—understanding that the ideas are coming
from the public rather than from researchers whose motives may not be as clear. The
public can also serve as motivated layperson reviewers of scientific proposals to carry
out research, much as they have already within the PCORI structure.
We propose to involve the public in a novel set of these opportunities, in a unique
matching environment that will start with the public, engage the public, depend on
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the public for financing, and be responsive to the public with regard to reporting,
explanation of findings, and accountability to public interest.
(c) High-caliber researchers can be attracted to public-sourced and crowd-funded research
opportunities, through which they will communicate with the public openly about the
research process and findings. The research community rarely has the opportunity to
respond directly to patients’ collective expression of need, because funding sources are
inserted between the public and the researchers. This is true for the National Institutes
of Health and other traditional federal funding sources; it is also the case for even well-
funded foundations focused on particular conditions (e.g., Cystic Fibrosis Foundation,
Juvenile Diabetes Foundation, Alzheimer’s Foundation), where lay representatives and
advocates may propose ideas but those ideas are heavily vetted before they take the
form of calls for proposals.
We propose to engage researchers in new ways, much as the public will be engaged in
new ways through the WellSpringboard matching platform. Through
WellSpringboard, researchers will apply for funding for ideas that have been supported
so strongly by the public that they have reached and secured funding goals. Their
proposals will be reviewed for scientific merit by a scientific committee and will also be
reviewed by volunteer readers for perceived merit in the eyes of the public.
THE PLATFORM
WellSpringboard is designed to connect ideas proposed by the public with the expertise and
capacity of researchers who want to conduct patient-centered outcomes research by drawing
on suggestions broadly endorsed by the public.
As such, the WellSpringboard platform has a dual-facing framework, able to welcome the public
and also researchers, in a seamless way that promotes the ability of each group to learn about
the other and facilitate matches. The essential framework is depicted below:
WellSpringboard
Sharing crowd-sourced ideas (via the
platform and social media)
Exploring ideas and researcher
profiles
Supporting ideas
Involving experts and the public
Public submits
ideas for patient-
oriented
outcomes
research
Researchers
indicate their
interest in ideas
and (when ideas
are funded) submit
applications
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Key elements of the WellSpringboard platform are:
1 – Open invitation – to the public, for their ideas about how to improve medical care through
patient-centered outcomes research. In the commonly asked questions component of our
prototype website, we give guidance about what patient-centered outcomes research is. We
also welcome questions about how to propose an idea. Furthermore, we welcome researchers
to contact the team and to post their researcher profile materials. We have designed easy-to-
use forms to maximize ease of contributions for all.
2 – Help from the WellSpringboard team – to the public and to researchers, all of whom will be
initially unfamiliar with the idea of a website where medical research ideas from patients (and
other members of the public) can be matched up with talented researchers with the expertise
to carry them out. Our team is deeply committed to the success of projects that engage the
public voice in research (e.g., our C.S. Mott Children’s Hospital National Poll on Children’s
Health [http://mottnpch.org] and our National Voices Project
[http://nationalvoicesproject.org]). With that commitment in mind, we are excited to engage
members of the public and of the research community so that they can learn about what
WellSpringboard offers and how it can be most successful. We have started this process with
our Commonly Asked Questions section on the prototype website. We have also posted a
demo/walkthrough video. We expect that we would post additional materials for guidance as
the project evolves.
3 – An iterative process – We expect that ideas from the public, and researcher profiles from
potential investigators, may need some ‘fine-tuning’ in order to maximize the potential for
optimal matches through WellSpringboard. Therefore, we plan to welcome submissions and
then encourage editing of video and text elements in order to shape and then share patient-
centered ideas in ways that are transparent, generative, and encouraging to many groups in the
U.S. population, as appropriate for the ideas. We also anticipate that the public may need
guidance in setting reasonable funding goals for their ideas, related to the ideas in question, the
patient populations, and the possible study sizes.
4 – Many ways to participate – The public is welcome to participate in several ways: (a)
through micro-finance donations (similar to the Kickstarter and Medstartr models, using online
pay modes that are drawn upon ONLY if the idea meets its funding targets); (b) offering to
volunteer to be part of research conducted for a funded project (which would require new
contact from the selected investigators and appropriate informed consent, as pertinent to the
study design and subject burden); and/or (c) offering to be a public reviewer of applications
submitted by researchers.
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5 – A clear connection from ideas to researchers – The matching aspect of WellSpringboard is
central to the mission of the effort. That matching process must have the participation of
engaged, experienced, and open-minded researchers who want to work with crowd-sourced
ideas. Each review process for a funded idea is expected to lead to the selection of one
successful application from a researcher or research team.
6 – Follow-up that is clear to the public – The WellSpringboard site will not only tell the stories
of matched ideas and investigators, but will also serve as the location for progress updates from
WellSpringboard-funded researchers, where they will share their progress and findings with the
public. This component is intended in part as accountability to the public for its funding
support, and also as an engine for further inspiration and idea generation – to see the fruits of
the WellSpringboard idea in action.
7 – Reaching out to hard-to-reach populations – WellSpringboard is designed to welcome and
reach hard-to-reach populations, including Spanish-speaking individuals (the prototype website
has pages in Spanish if that is the preference of the visitor). As a Web-based effort, this
initiative will face fundamental challenges in terms of reaching seniors and rural populations,
but we plan to address these barriers by: (a) reaching out to partner with senior-oriented
groups such as the American Association of Retired Persons; (b) creating a mobile-phone-
friendly, Web-based application format of the website. Our partner, Inner Circle Media, also
has extensive experience in marketing and development of Web-based apps and will therefore
assist in these efforts.
THE FLOW OF FINANCING FOR RESEARCH THROUGH WELLSPRINGBOARD
If this proposal is selected for further development by PCORI, Dr. Davis (PI) will initiate
proceedings to start WellSpringboard as a 501(c)3, not-for-profit organization. This will permit
donors to WellSpringboard to make tax-deductible contributions to research projects, as a way
to encourage donations.
Furthermore, it will allow WellSpringboard to work in partnership with PCORI to collect the
public donations and then disburse them to researchers selected through the WellSpringboard
application review process. Although the WellSpringboard team is not currently aware of
specific federal stipulations that would guide such a process, the WellSpringboard team would
look forward to managing this process in all manners consistent with and appropriate for
disbursement of research funds by PCORI.
In addition, the WellSpringboard team proposes that, while donations from the public through
the WellSpringboard site would be used for direct research support, that PCORI would consider
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providing funds in supportive ways that would amplify the potential impact of the research.
We propose two options for consideration (neither of which is mandatory for WellSpringboard
to exist; these are proposals for additional PCORI support):
Option A – WellSpringboard funds ($x for a given project) would be provided for direct research
support; PCORI would provide 0.3*x funds to support indirect costs, for total funding of 1.3*$x.
Option B – WellSpringboard funds ($x) would be matched by PCORI funds ($x) for direct cost
support, accompanied by 0.3*x funds for indirect costs. This would yield total funding of
2.3*$x.
Operational funding for WellSpringboard would be modest, dedicated to supporting an
experienced staff of a Web Manager, Project Manager, Outreach Associates, and the PI.
BUDGET PROPOSAL FOR THE CHALLENGE FUNDS
With the $40,000 award through the challenge, the proposing team will further develop the
prototype WellSpringboard website (http://wellspringboard.innercirclemedia.com). This will
require:
Personnel:
Matthew Davis – Dr. Davis is a primary care physician, health services researcher, and
experienced online survey investigator. As Associate Professor of Pediatrics, Internal Medicine,
and Public Policy at the University of Michigan, Dr. Davis has several years of national survey
experience and over 150 peer-reviewed publications. He is also an experienced PI with several
federal grants in the past. He will commit 2% of his effort from this challenge funding for 1
year.
Anna Daly Kauffman – Ms. Kauffman is an experienced web administrator for Dr. Davis’s
National Poll on Children’s Health and National Voices Project. She has worked directly with
the web development partner for WellSpringboard, Inner Circle Media, to develop the working
prototype. Ms. Kauffman will commit 10% effort from this challenge funding for 1 year.
Website Development Partner:
Inner Circle Media is an Ann Arbor-based web design and development firm that has previously
won competitive bids for online projects developed by Dr. Davis and his team. The leadership
of Inner Circle Media is fully supportive of this proposal (see attached letter of support). Inner
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Circle Media will provide central logistic support for development and deployment of the fully
operational WellSpringboard website. They will begin their work on this effort with $20,000
from the challenge award.
Server Space:
To accommodate the expected online traffic and memory requirements of WellSpringboard,
the team will need to reserve server space that has not only ample baseline memory but also
burstable capacity in case of high volumes of memory-intensive (eg, video) traffic. The
competitive rate for such server space is $99/month, for 12 months.