Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study

Background Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. Objective This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. Methods We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. Results The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group’s decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.


Survey Instructions
This is a survey about your healthcare experience and your opinions about how health information is used and shared. We are interested in your thoughts and ideas.
We all use the healthcare system or know people who do. This system includes the healthcare provider, like a doctor or nurse, who you visit when you're sick or for routine visits. It also includes hospitals and people who work on quality improvement, and administrators who make decisions about how clinics and hospitals are run.
When we ask about "the healthcare system" we are asking generally about the healthcare system in this country. When we ask about "your healthcare system" we are asking about the healthcare professionals and institutions that you personally interact with.
Please answer each question to the best of your ability, but you may choose not to answer any questions you don't want to answer.

Scenario A
1. After reviewing the four "policy options" for Scenario A, how would you rank them in order of how strongly you support them (#1 being the one you support the most, and #4 being the least

Hospital cancer registry
The hospital keeps a special database of records from all its cancer patients, called a cancer registry. The person who maintains the database, the "registrar," adds Florence's record to the hospital's cancer registry. The record includes her cancer diagnosis, treatment information, and data like her age, sex, and race/ethnicity.

Treatment
Florence receives treatment for early-stage breast cancer. It includes a 6-week course of radiation. She also takes a drug specifi cally tailored to the genes in her tumor. Aft er several months, tests show Florence to be cancer-free. She will follow up with her oncologist every 6 months. The hospital registrar keeps track of Florence's progress, updating her record when she receives treatments.

Health Information Exchange (HIE)
A state Health Information Exchange allows Florence's health information to travel between her health providers and between hospital, state and national registry databases that collect information about cancer over time. The state registry checks in with Florence's hospital registry for updates each year. The hospital registry also reminds her oncologist to schedule annual checkups.

Scenario A
How it works now Florence received a generic HIPAA form when she fi rst became a patient. This paperwork lists her health system's data sharing policies. Her state HIE enables local, state and national data sharing. Her biospecimens (e.g., blood samples, tumor cells) are saved and stored. Florence is not really aware of how her data is shared.
Imagine that your healthcare system was considering a set of policies that would change how patients are notifi ed about health information sharing.
Aft er reviewing Scenario A, think through the four "policy options" listed right (A-D). You'll rank them in order of how strongly you support them (#1 being the one you support the most, and #4 being the least).
You'll then discuss them and decide as a group how you would rank or prioritize them.

POLICY OPTIONS TO DISCUSS & RANK:
A Plain-language policy notifi cation Florence's healthcare system would provide plain-language notices of its data sharing practices. This notice would be printed in papers handed out at doctor visits, and could also be viewed in her patient portal.
Every time Florence's information is shared through her state HIE, Florence would receive an email or text notifi cation.
Florence can easily view a list of organizations that have viewed or used her health records and biospecimens.
Florence's healthcare system would make no changes to its current practices.

Future uses of data & samples
To reduce the cost of genetic testing, the hospital has an agreement that Genom11 can keep tumor samples and her healthy DNA aft er testing. Genom11 can use samples and patient data for their own studies and to work on developing new drugs and treatments.
Profi ts Genom11 owns thousands of samples. Genom11 can sell them to other companies and/or use them to develop new drugs and treatments. Genom11 makes money from selling samples, patient data, and products.

Scenario B POLICY OPTIONS TO DISCUSS & RANK:
Imagine your healthcare system was considering a set of policies that would change how it shares health information with commercial companies and how patients are informed or involved when it does.
Aft er reviewing Scenario B, think through the fi ve "policy options" listed here (A-E). You'll be asked to rank them in order of how strongly you support them (#1 being the one you support most, and #5 being the least).
You'll then discuss them and decide as a group how you would rank or prioritize them.

How it works now
Florence's hospital has sharing agreements that allow commercial labs or companies to store data or samples and use them for ongoing purposes. The next questions are about the use of your health information by commercial companies.
Commercial companies are third-party companies that are not part of a hospital. For example, a third-party commercial company may conduct genetic tests and analyze information for a hospital or healthcare provider for a fee when a hospital is not able to conduct the test on their own. Commercial companies may keep the information for their own use.
10. For you, how true are the following statements? Circle one answer on each row. The next questions are about organizations that have your health information.
Organizations include groups such as healthcare providers' offices, hospitals, insurance companies, and university researchers. ( The next questions are about healthcare providers and healthcare systems.
14. For you, how true is the following statement about health care providers?
All things considered, health care providers in this country can be trusted. 29. Do you have any comments you wish to share about the session day or this study, in general?
Thank you for completing this survey!