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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.